okay

I wrote the following one night a few weeks ago...I never clicked "publish" because I wasn't sure if I should.  Today I realized it's honest and I'm not afraid to say it....

My heart hurts tonight.  I spent the last hour lying awake in bed until I decided to get up and grab the computer.  I have a thousand different thoughts swirling through my mind right now and the only thing that is clear to me at this point is that I am not okay.  Admitting that brings stinging tears to my eyes, but its the truth.  The life we have been living for the 15 months has been...well, I don't even know what word to use that could do justice to our experience.  And as hard as I have pushed, fought, worked, prayed, pretended, and convinced, when it comes down to it, I am actually not okay.  I am not strong in the face of the trauma we have experienced.  I am weak with fear for the future.  I am still mourning the loss of the dreams we had.  There isn't a day that goes by where I don't cry for my family, my husband, myself, or my baby.  I know I do not have the market cornered on tragedy, loss, or sadness, but I am definitely in the game.
I have the most beautiful little miracle for a daughter.  She has fought for her life since the day she was born, and is winning.  She has overcome more obstacles than most people would in ten lifetimes.  And yet, with all the joy she brings me every single day, I am not okay.  I celebrate each little victory along the way, I notice every new skills she acquires, but I am not blind and I am only human.  I notice other children her age.  I see them sitting, rolling, crawling, standing, and even walking.  I hear them belly laughing, babbling, squealing, blowing raspberries and even saying their first words.  I watch them eating and drinking.  I listen to their parents complain about changing pooping diapers.  I know that other parents have nannies, babysitters, and daycare.  We have nurses.  I notice moms carrying their babies around their house, picking them up and walking across the room, or bringing them with to answer the door.  I am not blind, I am only human, and comparison, regardless of how incomparable, is unavoidable.  And the differences hurt.  They frustrate.  They resent.  I read stories of moms who have walked this road before me and I am terrified because I know I cannot protect Fiona from everyone.  And the knowledge that someday, someone will ridicule my baby for something over which she has no control.
There are a thousand clichés that people could say to me now.  There are countless words of encouragement, assurances, and pieces of advice...there are many people in life my that love me, that love Fiona, and support us both and always will...yet often I feel totally alone.  I feel alone and not okay.  I have spent countless hours over the past months trying to get better, feel better, accept, embrace, get-over, and ignore.  I have days when I feel triumphant that precede days when I feel utterly defeated.  There are no clichés or assurances that will make me okay again.  Will I ever be okay again?  Will I ever get through a day without tears?  How will I make it through the rest of this life feeling this way?  The journey seems too treacherous, too steep, and "okay" seems unattainable. 
I look forward to the day when an alarm doesn't trigger a horrid memory, when the clank of oxygen tanks doesn't make me want to throw up, when a phone ringing doesn't send a chill up my spine.
I used to think that once we left the hospital, everything would be okay again.  And home is a glorious place, but everything is not okay.  Is the idea of "okay" similar to that of "normal"?  Is there really no such thing as "okay"?

Tonight I decided to finish this post and publish...

There is a quote from scripture (1 Thessalonians 5:18) that someone posted the other day...it says, "In everything, give thanks".  The poster followed with talking about the difference in giving thanks FOR everything vs. IN everything.  She explained this within the context of the story of her journey with her young daughter with Down syndrome when she was hospitalized and near death.  She said, and I am paraphrasing, "Of course I am not thankful for the fact that my daughter was near death...but I was still thankful in that time, that we had caring nurses that watched over her, dedicated doctors that worked to save her, and supportive family and friends to help us through".  Her point was well taken.  And you don't have to be religious to live by this principle because I think the idea behind this thought is perspective.  I think one of the many paths to living a happy life is having perspective.  Easier said than done, but as I finished typing that last sentence, I turned and watched Fiona roll over on the floor, back to belly, completely by herself.  I clapped and cheered and she looked at me with a huge smile on her face.  Thanks Fiona.  In times when I am feeling sorry, feeling sad, I can look to her and find joy.  Of course, I am not thankful that it has taken almost until her first birthday for her to roll over, a skill that is typical of a child more than half her age...but I am thankful in this time that she is able to roll over, that she has built up her strength after so many months of sickness and immobility.  I am thankful in this time, that even though her milestones are behind and hard fought, that we have wonderful therapists to give us guidance and live in the presence of the strongest, most miraculous child in our world. 
I guess I don't really know what "being okay" means for me now.  But I think Fiona is showing me that joy exists in the presence of pain and she is showing me how to find it.