Friday, August 31, 2012

Changing Our World One Life At a Time

"We are therefore Christ’s ambassadors, as though God were making his appeal through us. We implore you on Christ’s behalf: Be reconciled to God."
~2 Corinthians 5:20, NIV~

"We ourselves feel that what we are doing is just a drop in the ocean.
But the ocean would be less because of that missing drop."
 ~ Mother Teresa~

The other day we had my son's 504 plan meeting with his 7th grade staff to prepare for the new school year.  What a far cry it was from the first inservice we had done with a treatment center nurse and the staff of his 4 year old preschool so many years ago!  I remember it like it was yesterday, wanting to crawl under the table as the nurse proceeded to tell his teachers that his clotting factor was made from Chinese hamster ovaries.  Did they really need to know that?  I recall how deeply disappointed I was at the entire experience, and how little it had done to really build understanding and acceptance of my son.

From that point on, I had vowed that I would do every inservice by myself, so I could correctly direct things and better help faculty to develop a comfort level.  While I homeschooled him in both kindergarten and 1st grade (a completely gratifying experience, I might add), I was fully prepared when I returned him to public school.  Good thing, as had I not been ready, the mortified look on his 2nd grade teacher's face at our inservice would have left me hopeless.  Thankfully, things went much better this time.  Teachers and other allied staff asked good questions.  Thus commenced a year where both adults and children whom we came into contact with daily, got to know this charming young man and the mysterious diagnosis that came along with him.

Our son developed a new best friend, his dearest buddy to this day.  The other kids in the community got to know him for who he was, not just what he had.  Every year they began to grow in their understanding of this distinct individual and his rare diagnosis that many fear in ignorance.

I won't kid you, there have been years that have been absolute hell.  His 3rd grade year was marked by a dear teacher who did not have control of her difficult class.  He was physically bullied by a child on the autism spectrum, which was difficult to work through.  Another time, I had to race to school as he was found during quiet reading time asleep in a puddle of his own blood.  Still, Christ used those experience,s as we persevered, to teach both ourselves and everyone around us so much more.

Transition to intermediate school certainly wasn't simple either.  A larger school with twice the children made things interesting.  We had to begin all over with completely new faculty.  New adaptations had to be made as this age group of males is notorious for slamming one another into lockers.  Last year we tested another  new set of accommodations, attending school in a wheelchair and with a PICC line placed in his arm.  Again, every previous year we had spent with cooperative school staffers and fellow students, only stretched the understanding and acceptance of each life touched by our son.  One year built upon another as concern replaced fear and compassion replaced rejection.

At this years 504, everyone in the small conference room laughed as they awaited our son's annual demonstration of how the clotting cascade works through the use of a domino chain.  Confidence from fellow colleagues gave buoyancy to the two new staff members who learned of how they may need to adjust in this new school year.  It had to be one of the shortest, happiest school meetings of our lives.

I left sensing that we are changing the world one life at a time.  This change we bring is not only because of hemophilia.  The disorder is merely a vehicle to break down barriers, dispel myths, build understanding and compassion.  Because of the suffering of this family and the Savior we love, we carry the Gospel message with us through every little piece of this journey we endure.  When school staff sees me laugh rolling my eyes or singing circus music through chaos, that is Christ in me.  I couldn't do that without Him.  That sweet boy's demeanor and genuine leadership tendencies are born of the struggles he has navigated holding on to his Maker's hand.  Even though he is young, he knows Where his help comes from.  As our family works with teachers, school nurses and administration, rather than coming at them with guns a-blazing, they witness the difference Jesus can make in a life.

That is our unique gift as parents of children with special needs.  People will listen to us in ways they never would hear the average person.  We have a credibility that comes from our degree earned at the university of a challenging life.  The distinct opportunity is there, ripe for the picking, to dispel the myths that individuals may have picked up along the way about God being harsh or earning our way to heaven or not being good enough to approach our Creator.  We are privileged ambassadors, image bearers of a merciful, loving, tender God who cares deeply about each of his precious children.  And because of that role, we can build a better alliance each year that passes, between that one life at a time and the Savior who loves them so passionately.

PRAY:  "Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

O Divine Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen"
 ~ Prayer of St. Francis of Assissi~

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