The future

Before the devastating news we received last Friday, I was so worried about Niko.  I was worried that she might have a form of skeletal dysplasia that would put her at a disadvantage for the rest of her life.  I was worried about her tough existence of being teased or stared at her whole life.  I was worried about her finding someone to love her and marry her and take care of her.  I was worried about the odds of her passing the disorder to her children.  I was worried about her future.

Now I'm worried that she'll live to an age when she will realize that she has no future.

I'm unable to understand my feelings right now.  I weave through sheer devastation and denial.

I'm somewhat relieved that we know the answer now, which is the only thing that is lifting the weight off my chest, but not my heart.  No more self diagnoses via Internet.  I had actually found and read about I-Cell online but dismissed it.  In the history of Internet-self-diagnoses, I believe the outrageous worst case scenarios are often unlikely and placed online only to scare and punish the over zealous search junkies.  In my case, I hit the jackpot.

I don't know how to accept the fact that nothing can be done.  Nothing can be changed.  All I can do is love her and try to relieve her of pain.  With so many serious medical issues that she will face I know this will be a very gruesome and tiring job.

Up till now, my solution for Mila's pain has always involved kisses.  When Mila falls and scrapes herself, I kiss her wounds.  It stops her tears immediately.  I don't know what to do about a leaking heart.  I can't fix oxygen shortages.  I can't stop her joints from stiffening and fusing.  What will I do if her liver doubles in size in one month?  I can't do anything for her.  I don't know how to protect her and make her better.  I don't know how to stop her tears.  What am I to do?