Thursday, September 20, 2012

mid week jumble.

the following photos (except for the last random one) were taken by Tiffany.  Because she visited us.  I got to see her.  You should go visit her too at
Today I took the kids to story and craft time at the library.  For the first time in a long time my stomach felt like it was eating itself as I looked down at the back of my two redheads.  Their heads are so perfect and their little bodies are really beautiful.  I sat in awe of how well behaved they were.  Braden doesn't like any kind of injustice and got angry when the boy next to him was trying to take another boy's sitting mat but other than that, they were so good.  Suddenly I was overwhelmed with the knowing that these other kids are living a much different life than that of these kids.  They are all so oblivious to what goes on inside Nora and Braden's home and Nora and Braden don't know anything different.
 I couldn't help but be wrapped up in grief for my children.  I was explaining to my mom the other day that I believe that grief has to be so much more difficult for mother's who lose a child with siblings.  I have to bear the burden of knowing that these kids will some day lose a sister and in the meantime, looking at their innocence is terribly difficult.  It's hard to pinpoint the exact feelings that come with this territory but in that moment at the library I knew it was feelings of remorse and guilt that I was feeling.  Irrational or not, I am their mom and I feel it for them.
Mabel had a great day today.  Yesterday was a nightmare and today was a glorious dream.  She is pooping on her own again (with the help of her meds and not me--yippee!).  I am so thankful.  She is also randomly bearing weight through her legs again yesterday and today.  This is something that she hasn't done in months on her own.  We are always so perplexed and yet grateful when she does something that exhibits strength.
 This is mitochondrial disease awareness week and although we have a different diagnosis than we originally thought we would have for Mabel, I am deeply touched and affected by several families living with the diagnosis of mito.  If you think of it, please wear your green this week to support the thousands of children and adults affected with mito and feel free to share your photos with me on our Raising Redheads Blog or Mabel's Able facebook pages!
 We have big plans to spend time loving on our children and each other this weekend.  
What are your plans?

1 comment:

Tiffany said...

I still cannot believe we were together. It was far too short, and I cannot wait for it to happen again. Ramee, please know that I pray for you. I pray for the strength that you will need for the days ahead. My heart breaks for you. This sucks. I love you, Rame. God will make you strong enough for this. Hug those babies tight, and enjoy the gift of today. I am going to do the same. Nothing else matters right now, except here and now. <3