For the Love of Ivey

It never ceases to surprise me how this world I live in with Ivey is a never ending book of lessons in life.  It seems like with each lesson a new layer of scaffolding is erected somewhere inside of me, layers of strength in preparation for the next new lesson I suppose.  In day-to-day life, no-one would ever know that is what is happening on the inside, but it is.  Days are full of balancing a little work around a haphazard summer routine, chaotic, and like most summers, especially as the kiddos get older, an endless pile of laundry to tackle.  But on the inside, the nuts and bolts are tightening to secure that scaffolding. Ivey is eight now, so after eight years the sound of those hammers and drills go unnoticed most days, that is until small tremors cause the scaffolding to sway or an earthquake hits without a moments notice. Lately Ivey has been bombarded with an increase in seizure activity.  It is daily for the most part, every once in awhile she might...

This morning Ivey-loo-whoo set off to begin her second week of school.  From the looks of things, she was not quite in school mode this morning. This is how this week is starting. When I say she is a ham, she is A ham!   Matt sent the picture since he is on the rotation of taking her to school this week.  I think Ivey may have figured out that she has started back to school but the boys have not.  I'm sure this is her way of protesting. While Ivey is working hard at school, the boys are officially winding down summer and gearing up for school.  Walker actually said last week that he misses his friends and is ready for school.  The boys are all registered for school with uniforms being pulled out of summer storage and new shoes revving to go.  Personally I'm not ready for summer to end. The boys and Ivey are obviously in two different school systems.  Ivey is in our county school system and the boys attend a private school.  I ...

Last weekend Ivey, through the eyes, ears, lungs and legs of her brothers, completed another R.A.C.E Rome triathlon, this one to benefit the Open Door Home.   Am I proud of them?  Absolutely.   I am proud that Ivey has found a stable spot in her life.  That spot is something deep inside her.    As for the boys, I am proud of their hard work and finishing each race - for their own perseverence.  Ivey is merely the cherry on top.   As a spectator, it is interesting to hear different comments as the three of them move through the race.   Yes, they are amazing.  But to me they are amazing because they are my babies.   BUT.  The boys pulling Ivey through the race, for me, not so amazing.   They do with her because they love her and they know no other way.   Literally, they don't know or remember a life without her.   A "typical" life I know.  Matt knows.  As for the boy...

"Sometimes being a BROTHER is better than being a SUPERHERO ." This summer our rep for Ivey's IVig infusions called to ask permission to nominate Ivey and her brothers with an organization called " TinySuperHeroes ".  The children nominated for this organization all have special needs and the organization makes and sends superhero capes to the children. In this case, Britni asked to nominate Ivey and the boys because Ivey is our superhero and the boys are her superheros .   The boys were so excited to get a cape too. They are getting older but there are somethings that can never be outgrown. Sometimes it is the simple things that mean the most and say the most to the boys. Simply, it is the same thing we seek for Ivey, inclusion .  Someone thought of them, someone realized their value and most importantly someone saw the magnitude of living this special life as well.   They are the unsung heroes.  They are easily overlooked in the presence of Ivey....

Top Sail, North Carolina (Camp Lejeune) with Taylor and Craig.   Frightening amount of huge shark teeth on that beach. St. Simons with the Griffeths'.   This is a handy-dandy gift from Santa.  She fits weight wise but she is so long.  But, good workout for the daddy.  I apologized to her in advance for the crazy hair.  I put sunscreen everywhere, so those curls get a little messy.  Snuggling with the brother.  (She is almost as long as he is.)  Standing in the stander with her new back brace.  Loves it!  Birthday party for our Ava. (Ava is the one in the construction gear.  All girl, but note she is the only girl besides Ivey, so she's just one of the guys. )  Again, St. Simons with the Griffeths'.  Godparents are the bestests!  (I know that's grammatically incorrect.)  Griffeths' amazing dog.  Would not leave her side the entire time.  And lots and lots and...

A view from Matt's rearview mirror as he is taking Ivey to school.  Obviously, she's more than figured out this peek-a-boo thing.  Love me some Ivey-lou-who. If it weren't for her shoes, she might have pulled this off.