The Necessary Evils

      This week had one of those 'Must Do, But Really Don't To' tasks. Our girl's, (I will refer to as 'Boo'),  Educational Team Report or 'ETR', a set of evaluations that are required by the school at the beginning of preschool and then are repeated again at the transition into kindergarten. I dread these meetings for a number of reasons. For one, it causes me to look directly at the negatives reminding me that she is very behind. I remember sitting at her last ETR Meeting 3 years ago (HOLY MOLY! time flies!!!) and setting goals, dreaming of where she'd be after all of the intense therapy that the school and doctors were recommending.
     In my head, I know that she has come leaps and bounds in the last 3 years. She can now write and an 'L', the first letter in her name, 80% of the time. She can sort objects like food and animals into the appropriate pile. She has achieved riding the scooter ALL by herself!  She can catch a ball, walk up and down the stairs, turn the T.V. on and off with the remote, dance herself silly...quite the accomplishments for our Boo considering the Doctors said she would be in a vegetative state her whole life!
      Now, for the areas she is lacking. She cannot identify colors, letters, shapes, etc, which are the necessary building blocks for her to advance in the area of academics. She is  unable to pedal with her feet on a tricycle or play age appropriate games with her peers. All of her daily living skills (i.e. dressing, bathing, eating) need assistance from an adult. Big girl panties are no where in the foreseeable future. Her knowledge of danger is limited. The forms of communication are only interpreted by those who are around her most of the time. The list is continued....
     Hospitalizations are always looming. Therapies get cancelled, moved around, rescheduled, you name it. Therefore we work extra hard at home non stop. That is what this special needs life requires.
    As I sit and stare at the mounds of paper work, lists of phone calls to make, and the upcoming appts on the horizon, looming tests.... I close my eyes. Do you know what dances across my vision?  A beautiful, amazing, smiling little girl. A girl who doesn't believe what the professionals say, what the test results are, or how she appears to others. She is too focused on beating the odds and just being HER! Which is an incredible feat if you ask me.
     Are you a Momma to one of these special gifts? There are so many moments when we must look at the charts, statistics, diagnosis, progress reports, prescriptions, therapies, etc. We need to take more time to put all of that aside and look at this soul, this heart, this person in front of us who is one of the most tender and beautiful creations ever made. To make more moments of praise, of celebration, because we know all too well, that tomorrow is not promised. As grown ups, we have responsibilities that we can't neglect, I understand that completely. In all the hustle and bustle of our frantic lives, may we never forget to take advantage of every single moment that may bring a smile to that precious face that we fight for with each breath we breathe. What an honor to be able to be called Momma by one that was 'Created Beautifully Special'.