I wish I had a camera built into my eyes so that every time I caught her giving the beautiful looks that she gives or making the precious sounds that she makes, I could capture it right then and there.
I am desperate to memorize her.
Today I spent the afternoon laying beside her in my bed. She talked her talk and I listened intently. I have not stopped thanking God for the medicine that made her year-long crying spell come to an end. Rather than being filled with frustration, anxiety and helplessness, my days are now full of time spent with my girl, simply enjoying her.
I can't help but feel like we both deserve that.
I am so thankful.
She laughs a lot. She is vocal and makes a lot of 'bubba' and 'mama' sounds. She sucks on her fingers and smells of saliva, which I adore. She is wide-eyed and curious. She loves music and bath time. She smiles at the slightest hint that I am in the room.
I adore her the same.
There are mornings that I wake up far before she does. I lay in my bed and I let my mind wander to what it will be like when she doesn't wake one day. Sadly, another batten's family experienced this 2 weeks ago. With very little warning, their son just didn't wake up. It's a huge jolt back to reality for me and makes me incredibly depressed for several days after hearing of another life lost to this disease.
I want to know every day that I have loved her with everything in me. I have never been more in-the-moment than I am right now in my life and it's because of Mabel. She stops me dead in my tracks and helps me focus on her. And in turn, myself. And in turn, the Lord.
And in turn, my other children.
I hate to live constantly thinking about death and the 'what-ifs' of life but I am obviously in a position where it's very real to me to feel those things. I look at Nora and Braden and I am not immune to the fact that anything could happen to them at anytime as well. I put a lot of thought and planning into the inevitable changes that will occur with Mabel that I sometimes have to remind myself to do the same for Nora and Braden. Their lives have such incredible value and I am trying really hard to keep it all in perspective. I think it is challenging doing that with many children anyway, let alone in the unique situation that I am in.
With the holidays approaching I find myself trying even harder to once again slow down, breathe it all in, look around, focus. I am trying to tune into what my children need, as they are still in a very huge time of transition. I hope that I am being diligent enough in loving them and caring for them in the ways that are best but it is a challenge.
I am happy to say that just recently Nora has started to show a little more affection. There are still incredibly hard moments with her where she is very mean, and very closed off. But overall, our days are better than they were even a few weeks ago. Braden is such a roll-with-the punches kind of kid. I am so proud of him every day for how he loves life and wakes up literally attacking it. He is full of adventure and his heart is wide and open. He is doing great in school and has a lot of friends. I know that God has a really big purpose for his future.
I am working on incorporating some of the old traditions that are important to the kids with some new things this year to integrate things that will become part of our new 'normal' family traditions. I have a few ideas that I think will be meaningful and helpful for the kids.
As always, I just really want to get this right for them. They deserve it.
I started my day by waking sleeping children and I ended it by taking photos of them sleeping after praying over each of them. My life is so rich. So full. So overloaded with the very best of everything. I am incredibly thankful to God for everything that He continues to do here.
I'm just not sure it gets much better...