Wednesday, September 5, 2012


Today's gift is faith.

My daughter, like all girls like her who live with Rett Syndrome, place so much faith in their parents or caregivers hands.  The amount they trust us is unmeasurable.   Quite honestly, it is scary.  I find I question myself I doing enough for is she "really" doing....should I push her harder or back off a there anything else I can try....the list of questions is endless.

Thanks to my daughter, I have found I must have faith from tell me through words or actions, I am doing ok...or great...or I stink at this job....whatever it is I will take it... so I can try harder if I needed.  She isn't the only one I turn to when I need faith in my life and it is mainly because of my daughter I have found faith in God.  I remember the day so vividly when I realized how big the void was by not having God in my life.  My family went to church my whole life and we continued to go up until my daughter with Rett Syndrome started experiencing challenging behavior.  Every year we kept putting it off....with excuses and excuses and more excuses....until finally we made it a priority.  (To read about this special day click this link which will take you to my other blog to read a post about this day.... Hope)

In the past four months, I have seen ways my life has changed....for the me turning to God for the faith I need from him.  There are so many days, where no one (or at least I feel like this...there may be a few people) can truly understand how I feel and the only one I can talk to is him.  There are days when I have so many questions....why me....why my daughter...why Rett Syndrome....and he is the only one I can ask, as he is the only one who knows the answer.  There are days when I want to scream and cry for all the lives Rett has changed....and he is the only one I can turn to for this too (of course we have a support from other fellow Rett parents where we laugh, vent and cry together, but when it comes to wanting a deeper meaning only God knows the real answer).

Today was a day when many of my fellow Rett parents, Rett grandparents, and Rett siblings....were crying and asking these questions to God.  Why...why...why... Today a 4 year old girl lost her battle with Rett Syndrome.  I have never met this special little girl, but met her parents briefly in February when we ran the Princess Half Marathon honor of our daughters....who live with Rett Syndrome.   I don't even have words....I can't even begin to imagine what her parents are feeling....what they are thinking...I just hope and pray they can find faith in God to help them during this difficult time.  Their daughter was simply beautiful and I hope they will continue to find peace by looking at her pictures and remembering all the memories they shared together.  She is free of Rett to to to be herself....

We may never know why God has chosen or trusted some of us to be the parents of children with special needs until our final days....when we too are free.  And maybe then we will be able to handle the answer better than if he were to tell us earlier.  Throughout our lives he wants us to have faith in him and to bring all of our problems to him.  He wants us to trust him.  He wants us to believe in him.  If we can't believe in him, then how can we handle the truth of why he has trusted us so much?

I have faith.  I have faith in my daughter.  I have faith because my daughter has faith in me.  I have faith because I have faith in God.  I may not know "why" God has trusted me so much, but I will not give up on him, my daughter or my family.  I will trust him and believe he has a reason for everything.  Of course, it is difficult to come to terms with this, especially on days like today, but I have to believe and trust this is his plan for me.

Here are some quotes for today....

Be faithful in small things because it is in them that your strength lies- Mother Theresa

God enters by a private door into every individual- Ralph Waldo Emerson

God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.  If God brings you to it, He will bring you through it- Unknown

Faith is daring the soul to go beyond what the eyes can see- William Newton Clark

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