Another EB loss

Yesterday we lost another EB baby ..... who lived close by .... and who was actually at the same hospital in DC that Leah was.  I reached out to the family but have to respect that they never responded back.  I contacted all the staff that I knew they would see at the hospital ... in some futile attempt to advocate for them.  But again, had to respect that doctors and nurses cannot (will not) discuss other patients.  

And just like when Owen passed, I didn't feel right yesterday.  I knew something was up - and it wasn't good.  I was in bed by about 4:30, feeling sorry for myself and just wanting to be alone.  I read and watched TV - and was not surprised at all when I received a text message later in the evening that little baby Shannon had passed that morning.

So once again, my Leah wasn't with me; which makes me feel like crap.  It's sweet and scary at the same time.  When I feel like that I know she's on an angel-mission; and that makes me proud -- but on the other hand I know someone somewhere is saying goodbye.

Last night I came downstairs for a bit to check my email, and I opened up Leah's blog to listen to the music I put on here.  I closed (logged off) my computer.  (Once the laptop is closed, I have to re-enter my login password to log back on).  Once I closed the computer the music stopped.  Hours later Jeff stayed up watching TV in the living room (well within ear-shot) and didn't hear any music coming from my laptop.  
This morning I woke up at 5 (as I do on workdays), opened the bedroom door to go out into the hallway and heard this song playing from my computer downstairs ............. and it sounded like it had just started.  Like someone literally pushed play on my closed, logged out, computer.

(It's one of the songs on the blog (obviously) but this link has the lyrics along with an mp3.)

http://www.spiritandsong.com/compositions/75982

It's called Come to Jesus .... but I actually have a more-favorite (is that a word?) song with the same title that I've loved for years, but didn't feel it 'fit' the blog so it's not here.

You have angels that stand around your shoulders

'Cause at times in life you need a loving hand ............

Oh, my baby, when you're prayin'

Leave your burden by my door

You have Jesus standing by your bedside

To keep you calm, keep you safe, 

Away from harm ...........

Here in Heaven we will wait for your arrival

Here in Heaven you will finally understand

Thank you for reminding me, Leah.

Mother's Day with the Butterflies

So yesterday Leah arranged for me to have a pretty nice day.  As soon as Jeff woke up (literally) he saw this little clip on the news about an indoor butterfly garden in our area - and how it'd be a neat thing to do for Mother's Day. 

And the same exact time I was outside letting Sammie do her business in the yard and thinking how I'd like to go to IKEA to get my new desk.  (Even though I originally thought I'd just want to stay at home and sulk yesterday).

It turned out that the butterfly garden place and IKEA are about 15 minutes away from each other.

So away we went to spend sometime with the butterflies. 

(I had to take these with my camera phone so they're not great -- my Dad gave me a brand new camera and I forgot it at home! - Doh!)

This last one is not my favorite picture but was my favorite butterfly.  Pink and green are the colors we painted Leah's bedroom.