I warn that the following post is very very long and very emotional.  It is late, so I am aware that I am thinking only of my emotions and not of those who may be offended.  If I offend you, I apologize.  I am awake still at 2 am and this is what I have been thinking and writing.  It makes me cry reading through it, so I know you will need a tissue by the end.  Consider yourself warned smile

I am sleepless tonight because many thoughts are coming to my mind.  All of the changes of the past few days have hit us so hard and unexpectedly that I have hardly had time to process what they mean for Sonia and my family.  The thought came to me tonight that it is so barbaric of us to take my baby’s heart from her own chest.  We have begun to talk with the transplant team and to further understand what all of this means for the present time and the future, but I have only taken it in on a superficial level.  As I thought about what it means for Sonia to “get a heart” tonight, it scared me to death.  Up until this point, it has been my experience that heart surgery on Sonia has only made her worse.  I understand that this may not be the reality, but it has been my experience.  She was born a healthy looking beautiful baby girl with healthy sounding lungs and a perfect little body as far as her mommy could detect.  Then I turn her over to the doctors and before I know it she is full of wires and IV lines.  Within a week she was taken into surgery and when she came back I could hardly recognize her.  She had so many tubes and wires coming from her small body that she looked less than real.  A few difficult months went by and she was healthy and beautiful again.  Our bond had strengthened, with little help from our surroundings, and she was to me like any four month old baby. 

The doctors told me she was weak and that she needed another surgery and I went along.  The surgeon told me that he needed to repair her leak, and I took his word as God’s own truth.  A few hours later and these same doctors shattered my world and the world of my family yet again.  The same surgeon who was so sure her leak needed repair tells me it was not what her heart needed at last.  And now that he has tried she is worse off.  I should say here that I believe everyone when they say Dr. Spray is the best at what he does and the most qualified.  As a mom, however, I face the truth that although he was the one I chose to go into my child’s heart, it is that very work that has taken her where she is.  And although this may not be reality as it exists for other’s, it is the reality as I see it through my heart tonight. 

So where does this leave me.  Up until this moment I have taken the advice of these doctors as truth and have looked to them for every answer.  Our surgeon, who is highly respected by everyone in his field and by me, says a transplant is her only long term answer.  I mention in the company of a few that this surgeon is like a super-hero to me and one of the cardiologists reminds me that Dr. Spray puts on his pants one leg at a time like the rest of us.  From the moment he uttered the words about transplant to Jason and I, it has been my mission to get to that goal as soon as possible.  When the transplant doctor asked us what we would like him to do, I said without hesitation that I wanted him to list my daughter ASAP and work on getting her that heart. 

But now I am not so confident in that answer.  Five days ago, my daughter was a pretty healthy four month old.  She swung in her swing, lay in my arms, put up with “tummy time,” and often entertained us with her smile.  When I left her tonight she was just starting to wake from her sleepy state and was barely able to understand her position.  Her throat was dry, I could tell, and she was uncomfortable.  Instead of a quiet dark room, she was surrounded by people, strange noises, and lots of light.  The nurse did me a favor by turning off one.  It is my strong belief that Sonia will recover to her former state.  If we are lucky it will be sooner than later.  But I am wondering at this late/early hour how I can truly agree to another surgery. 

To begin with, we don’t yet know how well Sonia will be once she recovers.  With the success of her Glenn (with many sincere thanks to Dr. Spray, it may be that she is even healthier than she was before this recent surgery.  And it may be that she can survive for some time in that condition.  All of this with her own heart, her immune system in tact, and a relatively unaided and unmedicated life.  We don’t know for how long, but this may happen.  Even the doctors agree to this.

If we don’t get on the list or list her as “inactive,” we may pass on the “perfect” heart.  If on the other hand we keep her on the list and accept the heart the doctors choose for her, we will without a doubt be altering her body forever.  She may get the heart and not make it anyway.  She may get the heart and be worse off than she would have been.  One thing is clear at this time, that there is no clear cut answer as to what should be done.  No one can tell us how Sonia will recover and if we turn away a heart tonight it may turn out to have been the best option.  On the other hand, if a heart were to be offered tonight, and chosen as a good match for her, we may take away “healthy” years that Sonia may have otherwise reached with her very own heart.

How is a mother to live with these choices and decisions? 

Besides all of this, I am emotional tonight because my Faye is on her way to her grandparents house in the morning.  Tomorrow I will drop her and Cathy off at the airport and say goodbye yet again to my first baby.  A child who was once never far from my sight is now used to being without me, and I her.  It was all too natural for her grandmother to pack up her bag tonight.  She knows Faye’s schedule just as well as I do, if not more.  This is amazingly reassuring to me and yet devastating.  I am endlessly thankful and yet pained that I do not have a monopoly on knowing my child. 

The future of my family and my daughters is so hard for me to imagine.  Will we ever all live in our home in North Carolina?  And if so, will anyone we know still live there, or will they have moved on to other duty stations?  Will we ever feel safe with Sonia in NC, so far from her doctors at CHOP?  Will my family every be self-sufficient, functioning in the traditional way with the mother and father being fully capable of taking care of their children?  As I watched Faye sleep tonight I wanted to cry.  I truly want to gather my daughters and my husband and lock each one in our home to be together forever.  I am so completely and utterly sick of saying goodbye to them.  If it isn’t Sonia at the end of the day, then it is Faye and Jason.  And we never know for how long we are parting.  We have no idea what the future holds even for tomorrow, and that is scary as hell! 

I am so emotional and heartbroken tonight on so many levels I can’t count.  I am devastated that my daughter’s best hopes at this moment are for a life shorter than half of mine thus far.  I am desperate to be together with my family alone in our own space without a nurse or random person standing by.  I am praying that God will help us to see the right decisions, although I understand they may never be clearly cut.  I want my Sonia not to suffer and I want the privilege of sleeping by her side or at least under the same roof.  I want a whole day to go by in which my voice and my touch are the only ones she experiences – free from all others.  I want my girls to know one another for longer than a few days at a time.  I want so many things that I previously believed were my right and mine to have if I so chose.  Little could I have ever known that these things would be beyond my grasp.

I walk through the hospital and greet so many familiar faces with a smile.  Everyone wants to know that I am okay, and I show them that I am.  It is reassuring to them and thus reassuring to me.  And on the superficial level where I choose to reside during the day, I am okay.  But deep down inside, where the truth lives, I want what every mommy and wife wants.  I want a healthy happy family sleeping safely under my very rooftop.  And until I get this, I don’t think my heart will truly be at peace.

Finally, a promise that in the morning, at a more appropriate hour, I will return to my smiling and not so poetic self and will go back to shorter and more efficient posts.  Until then, thank you for your support and love.  It comes through in your comments and it really helps me get through all of this.  I don’t need reminding of how blessed I am, and of how amazing God is.  I trust and praise Him and thank him for everything I have in my life.  I know He understands that I praise Him even in these times of despair.