And so it begins…

20150613_140931471_iOSThis cute little girl is our little Bright Eyes.  She is a miracle in many ways and her life is the inspiration for the next chapter of ours.  That is why I wanted her to do the honors.  You see this little girl has already done something twice, that only a small portion of the population can claim, but it is something we will all do at some point.  She died.  Twice.  She spent five days on life support and had every drop of her blood removed from her body, filtered, and put back in.  For the first four months, she couldn’t cry to tell you she needed something.  For the first three years we had to thicken everything she drank or she would aspirate her liquids.  When she was four, we didn’t know if she would ever be able to attend school.

You would be hard pressed to know that by visiting with her.  To most, she is a curious, energetic girl that is living at a different speed than the rest of us.  She has many nicknames.  Butterfly, Bright Eyes, Purple Tornado, etc.  She is the only girl that I know that needs 4 changes of clothes before she makes it out the door for school (yes that really happened).  We praise God, she is attending school and just completed Kindergarten.  We lived all of her first years with her and we have to remind ourselves now where she came from.

She is a miracle.  A miracle by God, shaped with the hands of skilled physicians and therapists.  She is living proof, what a dauntless heart, with the right treatment can become.  We have watched her grow into a beautiful young lady full of life and curiosity.  We have seen her struggle and overcome with the help of the right therapies.  She is victory embodied.

Our other young ones have similar triumph stories, although not as severe as hers.  They had big obstacles to overcome, and all of them will have to wrestle with those challenges the rest of their lives.  But, they are learning how to overcome, cope and subdue those challenges so they can enjoy life and contribute in positive ways.  That is what therapy can do.

I have a confession.  I wasn’t a fan of therapy initially.  It was inconvenient.  It took a LOT of Beautiful’s time and I was skeptical that it would ever accomplish anything.  It didn’t take long to move me from skeptic to, “How do we get more kids benefitting from therapy?”  And that is exactly the next chapter of our life.

Bright Eyes, and her victory inspired our quest to bring the right therapy to the right children.  That is why she was the one I chose to put the application for our Nonprofit Corporation into the mail.   Our new quest is to start a Therapy Farm to provide just the right therapy for every child.  I pray you will stick around for the next chapter.  I expect it will be even more exciting than the last.

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Don’t use it all at once

GenerousSampleWe all know the helplessness of discovering that you are out of “personal tissue” (AKA Toilet Paper) after you have found yourself in the state where you need personal tissue.  After you have been there, you learn to be a bit more proactive and replenish supplies before someone is stranded.  Yesterday, Beautiful was giving directions to Bright Eyes in order to avert future catastrophe.

I wandered into the master bath in time to hear the directions Beautiful gave her in order to find the T.P.  After she was gone for at least twice as long as she should have, Bright Eyes arrived with her contribution, all smiles and pleased as punch that she could help.

Yep, you guessed it.  That little 2 ply square is what she brought to replenish our depleted supply.  It might not be effective, but she sure had fun bringing it.

A rose by any other name…

RoseMy little Bright Eyes had a gem the other day.  We were spending some time together and I was taking her with me on some errands.  It was close to lunch time so I told her she could pick ANY place she wanted to eat.  I would not necessarily make that same offer to the older kids, but it was safe with her.

As we drove down the road, she was naming different places.  She was just able to settle on McDonalds when she changed her mind.  She exclaimed, “Oh I know, we haven’t had Jingle Bells for a long time.  Let’s eat there!”  I didn’t know how to even begin to decode that one and glanced over my shoulder to see her, and hope for a clue.  That was when I saw the Taco Bell out her window.  Bingo! 

It is true that a rose by any other name would smell as sweet, but I am not sure that changing the name of Taco Bell really helps.