Dear Hannah

I just checked on you.  You were sleeping so peacefully in your bed.  Your hands outstretched.  You even kept throwing glances of a smile.  Were you dreaming?

I’m sorry for the hell you went through today.  You have been through so much already, and you handle it all so well.  When you were screaming when they put that scope down your nose, it was all I could do not to tell them to stop right there and forget about it.  You have had more blood pricks and blood draws than your daddy and I put together.  I’m so sorry.

I wish I could help you.  I don’t know what to do.  I can’t stop crying right now because there is nothing I can do.  I want to be proactive and do whatever it takes for you.  But no one can tell me what is wrong.  No one can tell me what to expect?  If you have NPC, am I going to lose you in the next couple of years?    I can’t bear that.  If it isn’t NPC, is it going to be another disease that will take you away from me? 

After hearing today that you may need to have a breathing tube and/or a feeding tube in the near future just wrecked me.  I have kept it together up until now.  But, I don’t know, maybe it is just the reality of what is going on that finally hit me.  I don’t want to see you deteriorate.  I don’t want to see you suffer.  This is just so cruel, you don’t deserve this.

You make me so happy, my little ladybug.  From the day you were born, it was all I could do but hold you on my chest.  These days, there are many times that I’ll snatch you from your bed just so I could cuddle with you.  Our favorite position is you cuddling up against me sleeping.  You are so peaceful in that position.  I hate letting you go.

Your daddy just called me on the phone.  He is on his way to work.  He wanted to know if I was okay.  I lost it when we got home from your doctor’s appointment.  I feel so bad for him too.  He is going through all of this too plus he has to work.  He doesn’t get to stay home with you every day and spend time with you like I do.  Why do you think he wakes you up at 5 AM so he can feed you and spend time with you?  He loves you so much.  I worry about him too. 

Then there is your brother and sister.  If something is happening, what am I going to tell them?  How am I going to tell them? 

I hear you waking up in the other room now.  Hannah, I’m so sorry.  You are so beautiful.  Your smile is so intoxicating.  You are my little ladybug.  I’m going to spend the rest of your life just hugging you every minute I can.  I need to clean up my face before picking you up.  I don’t want you to see me sad.  I want you to see how happy you make me and how complete you make me feel.

And now I’m crushed because there is a strong chance that you may never be able to read this.  Oh god baby, I’m so sorry!

Love,

Mommy