Wanting.

The stages of acceptance into this world that Ivey brought us into has come in many forms.  Sometimes it has been an easy journey to accept this life.  Other times it has been excruciating, on many levels that I guess it would be best to equate to the various levels purgatory.  And still there are parts to this life yet to be accepted.  Of course a lot of time is spent in denial.  And another part of the time is spent in this place with no name.

The years pass.  There are some things that become easier.  There are some things that everyone else thinks should become easier.   And then there is reality.

You find your stride.  You pick your battles.  You make your amends.  You watch others in wonder and in wanting.  Somethings never get easier no matter how much time passes.  Somethings you accept will always find their way to break your heart no matter how much you rejoice in your now.

Then comes the things that you don't expect.  Time is always an issue. Somewhere in there you wake up.  You wake up to the reality that there is more involved in the wonder-world than just your daughter.    Is that good?  Or bad?  Or somewhere in-between?  It's the in-between I am sure.  The honesty is this.  You wake up and realize that the siblings are actually okay.  They are living a life that they know no difference in.  They don't remember a simpler way.  They see the simplicity that we are so brutally learning.

One of the vaguest memories of Ivey's first days was a conversation about special needs children and that most of their parents end in divorce.  We laughed about that then because we were holding so tightly to one another.  But the stress placed on a marriage with a special needs child is brutal.  There are books about it.  We have work harder and more conscientiously to rise up over the stress.  Of the few things I remember to those first few day, I remember that they moved me off of the maternity ward to a different floor just so I would be in the hospital.  It was late and we were exhausted.  Matt and I slept on the hard floor of the hospital room together because I couldn't stand the thought of not being able to touch him.  I couldn't sleep so I laid there just needing to touch him.  Safety and real.  Not wanting to face the unknown that daylight would give.  Matt was literally a rock keeping us grounded at those particular moments.  I remember I could not stop my whole body from shaking from fear of what was to come.  If we lost her, if she came home.  I remember thinking, if we could just stay in on this hard floor in the in-between.

She came home.  And a new life began.  That first day was hell.  The feeding pump kept beeping at us.   She had monitors and tubes.  The fear was suffocating.  We were on our last nerve.  Then at eleven o'clock that night the first nurse walked into our lives.  Well, she didn't exactly walk in.  I had a vision of orthopedic shoes, glasses and hair twirled up in a bun.  What stood at my door looked like a supermodel.  I opened the door, took one look at her and shut the door in her face.  Literally.  I turned to see Matt standing with his mouth open just sputtering that I couldn't do that (shut the door in her face).  But I did.  She was beautiful.  I looked like I had wrestled an alligator.  How could this girl be in my home?  How could I sleep with someone beautiful down the hall from us?  Sometimes I just want my home back.

Before I go any further I need to set the record straight.  This nurse became a rock in our home on those long long nights with Ivey.  She taught me how to soothe Ivey.  She taught me how to hold her the right way.  She taught me to read numbers and not fear looking a machines.  She taught me to look at my daughter and to read her verses the machines.  She gave me confidence that Ivey would live.

Those were some excruciatingly long long nights.  I learned to depend on a complete stranger in my own home with my child.  She saw me at my worst.  Broken and desperate.

I am still broken and desperate some days.  In total I am okay and have witnessed more miracles in a week than most will in a lifetime.  I have seen the unimaginable.  But I still have not grown completely accustomed to this life.  My daughter on-the-other-hand is rebelling.  She beats all odds.  This past year I turned a corner with my daughter.  I have watched her grow and become this beautiful little girl.  I have a life with a daughter who was chosen to be special, to be a light and proof that there is something beyond us. I also live in a real world where I watch my friends with their daughters and I want what they have.

I remember reading all the books way back in the beginning of this life with Ivey.  They all said that parents having a special needs child would grieve that child, just like a death.  The parents would need to grieve the dreams they lost.  I can tell you in all honestly, those dreams do not die easily.  There is no time limit.  I watch and listen to my friends talk about dance classes and gymnastics and I have to take deep breaths.  I watch these friendships as they develop and my heart breaks.   I watch the children who would be Ivey's classmates and I miss them.  Lately I admit, I have been grieving.  With each turn of a new leaf comes a new assault of grief.   It hurts so much.  I want her life to have some simplicity, just for her sake.  And some days the pain is unbearable, other days it is merely an itch.

I am tired.  In each area of her life we are required to go harder and further.  We wouldn't have it any other way, but sometimes, sometimes, I wish I could admit just how tired we are.  I am tired. This weekend it came to light that there is one more area that will require extra steps.  The extra steps are fine, but I am so tired, I want it to be okay to be tired, to be sad and not need to put on a strong demeanor.  I have rambled, I know.  But it has been a hard couple of weeks, and I am tired, too many trips to doctors and a small case of cabin fever.