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.