July 3, 2014

Scaffolding

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 skip a day.  I cannot tell you what it makes her feel like or what she thinks about them.  What I would give for just one day for Ivey to have the ability to speak and tell me her thoughts, wants, dreams, likes, dislikes - what I would give to just once hear her voice; after eight years, I still want to hear her voice.  When she was a baby it didn't hurt so bad.  Now that she is eight, I see other eight year olds and I long to hear Ivey's voice, just once.  I want what others have- the voice they wish to have less of some days.  And yes, I am aware of all of the other wonderful attributes, but I am a mom who still wants to hear my daughter's voice.  But that is another story.

Ivey has BIG medical conundrums and she has little medical conundrums.  The BIG conundrums typically hit hard and quick.  Things like her cranial vault expansion a few years ago classifies as BIG.  It was very intense, very specific, a hard surgery, but in perspective, the duration was short - and when over, Ivey was a happier child.  Little conundrums are harder in many ways.  Often there is no rhyme or reason, the cause is unknown and the duration is unknown, which leaves to constant nonstop trouble shooting, thinking and frustration of not being able to help her, to be her mom, and make things better.  Seizures tell me - I am missing something that Ivey is trying to tell me.  These seizures this summer are little conundrums.  So what am I missing?

Seizures are part of who Ivey is and to be honest I do not want them to go away.  In many ways her seizures are her voice when something is off on her insides - be it an infection brewing, pain or some other quirky attribute that will need medical attention.  So for us, when her seizures increase or become more intense, Ivey is saying "something is wrong"; therefore, seizures are good.

Ivey's seizures have been on the rise all summer, a day or night has barely gone by without them.  I have been searching all summer for the cause, which means, doctor visits are frequent.  My mind is tired, literally exhausted, from constantly trying to solve this riddle both day and night.  The sporadic sleep during the night, for this duration, is catching up with me.  More time at Scottish Rite is a constant reminder how fragile she can be.  Tough as nails, but still fragile. My scaffolding is swaying.  And like any tired mind, it allows thoughts to creep in that are normally pushed down and on a shelf in the back of my mind.  After eight years, you learn to adapt, adjust and move forward, but somethings never go away.  But there are events that bring thoughts shoved down back to be dusted off and thought about.  It is inevitable.

Last night, though, I think part of my scaffolding crashed to the ground.

Like most people, I have not done the best job of keeping in touch with college friends.  People move, get married, have babies and the next thing you know - you have not talked in many years.  I have a college friend that happened with - but one night several years ago, we literally bumped into one another in the halls of Scottish Rite's ER.  I can't remember why we were there, but that night they were discovering a dismal diagnosis with their son.  Had we known our future back then in college, I wonder how it would have changed us in preparation for today?  Still, we have not talked often, but rather check-in with Facebook, a place so superficial can in fact be and is helpful to many of us needing to see we are not fighting battles alone.  The loom of a great tapestry is in motion and our threads are woven into it- our children's threads are bright and colorful -  so sometimes there is no need for lots of words and conversation, merely knowing your threads are woven together to make something beautiful is enough.  Her son lost his battle with cancer this week - nine awesome years in this world, seven battling cancer - he warriored on.

My heart hurts for her, the mom in her.  She is experiencing a fear that I have spent so many days trying to outlive.  Yet I know she would not change or give up any of her days with him.  His battle had a purpose and she is all the better for it.  I know this.  I can tell you unequivocally that should I have a choice between my Ivey and an Ivey without any issues, I would always choose this life with her.  Any other way and I would not have my Ivey - it would be someone else.  I think my friend would say the same thing.  We would take away the pain that they go through, but not my child.  So there is no choice.

When Ivey was born there were so many questions and unknowns, but one seemed to hang over the others.  Life expectancy.  No one knows - Ivey came into this world a fighter.  She beat odd after odd - shocking the hell out of everyone - and eight years later, she continues to shock the hell of everyone.    For awhile it was all about "if" and "how long" she would live.. life expectancy.  Then it became the growing force of "expecting life" - because we could either sit and wait and expect life to end OR we could "Expect Life" to be what we made it.  Somewhere in the eight years I stopped counting the grains of sand in the hourglass of life.  I stopped worrying so much about her time and starting focusing on her life.  So my heart is breaking for my friend because she just met a fate that we so desperately work to outlive. I can't help but think of her pain, I know the pain of fearing what can be lost and spending frantic hours to avoid it - so I wonder just how she is breathing right now.   I pray her scaffolding is welded together, and if it is not, if it is crashing, then I am most positive that she has family and friends surrounding her keeping it upright, holding it together.

Fortunately and unfortunately, this is a Life Lesson that is never ending in this world.  She is not my first friend to loose a child.  She will not be the last.  One day I may be forced to wear those shoes.  I have spent too much time in a medically fragile world - and met many friends - who like me are no longer counting grains of sand, but rather battling to outlive our biggest fear.  Still, sometimes, this life makes us stop and think about the unimaginable.  This tapestry being woven is beautiful - and the amazing stories it can tell - but even in its beauty, there is pain.  Life has it all and it all must be lived, no matter if we want to or not.

It has been months since I wrote anything here - and I don't know when I will again, so let me leave you with this.  If you ever drive by or visit a Children's Hospital, please take a moment to think about what is going on on the inside.  That hospital is fighting in some of the greatest battles in history.  Just walk the halls and you will see heroes. In every hallway, in every room, there is a child ~ Some there for short stays, some there for longer, some for something minor; others for the unthinkable, some will go home, some will not.  It is a place full of children and they are warriors.  Many of them come into this world only knowing how to battle, others take up their swords later in life.  But they fight and they fight together.  Their parents, siblings, family, friends, doctors and nurses take up shields to protect them as best possible.  Some of these children will battle it out in those hospital rooms, some will take the battle home.  But no battle goes without losses.  What these little warriors teach us pales anything we thought we knew before their sweet souls entered our lives; we would not change them or our lives, they touch our hearts and make us better - and we will carry them in us forever.

For my friend - I will not try to fill her void, my scaffolding crashed down so she can borrow it and protect herself with it now should she need it.

November 22, 2013

Forget Me Nots

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 get tickled as the school years gear up.  Tickled, but exasperated at times.  For Ivey the beginning of the school year is exciting, she is surrounded by great educators.  At the end of each year we meet, form the new IEP, and think toward the future.  So the beginning of the year is never a big surprise.  This year Ivey will have a new speech therapist.  We are going to missssss Mrs. Libby, but I have great faith that the "team" that supports Ivey will lead her and guide her and teach her the ropes, the deaf blind technique ropes.  And, I believe the new person wants to do her best with my daughter.  They all want the best.  I also know that everyday will not be a picnic.  I also know that no one goes into special education without an underlying realization that their days will be a little more challenging than other areas of education.  That is a fact, not opinion.

With the boys the beginning of a school year starts off a little differently.  In the weeks leading up to the first day of school we




September 29, 2013

A Race.


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 boys - this is it.  
There are no memories of any other way or choice, no before.  For them it is - always and forever.  

They, just like every other aspect of their life, race differently.  They race the way kids do when their sibling requires -  different.  

During the races, the spectators are reminded of the value of "normalcy".  The value of our "typical"  abilities become more valuable.  

I am proud of the sportsmanship.  I am proud of our community.  I am proud of the school that hosts this race.  And I am proud to be their mom.  



  


August 17, 2013

TinySuperHeroes

"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.  Often.

They take the hits.  Hard.  

They take the backseat.  Willingly.  

They revel in their roles as Big Brothers to such a fully involved Little Sister.  Selflessly.  

So, thank you Mrs. Britni.  You filled their buckets.  

Here is the link to the website for TinySuperHeroes.  I will put Ivey and the boys on their website soon.  In the meantime, if you need some inspiration go to the site to meet some amazing tinysuperheros.

The capes came in and I have yet to get some really good photos.  So these will have to do for now. 
Maybe the boys can wear them in the next triathlon...


 




August 16, 2013

Summer Re-Cap 2013 (Very Brief)

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 lots of puppy kisses.  Ivey gave him the Heizman.


 We go nowhere without a toothbrush.  (her favorite "toy"."  Good hygiene.)
 See, kisses galore.


 Ava's birthday.  Notice she is in heels.  What girl wouldn't wear heels and construction gear?

 More brother.




 Adults only.  Bahamas with our awesome friends "The Milfords".  Shark Week aired the following week.  Good thing.  I would not have put a toe in the water.  Needless to say, all the falls off the paddle board ended with me screaming thinking a shark would eat me.  (great fear thanks to one marine biology class.)
 More stander.  Such a big girl!

Ivey is NOT a snuggler, but when it is your Godmother, the rules don't apply to her.  I don't know what I would do without these two girlies.  (and Ava)

 I can't get over the pink sparkly heels! (not to mention the goggles.)

 The boys at the lake with our awesome neighbors.  Love them.

 And ... exhaustion from one very busy summer.  Note:  no pictures of a hospital...... the first of many "normal" summers for us....FINALLY!



August 15, 2013

Not gonna do it..

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.