One night after the wrestling match was over, we had this conversation:
M: Do you know you are beautiful?
M: Do you know you are smart?
M: Do you know you are brave?
M: Do you know you are wonderful?
M: Can you think of something else you are?
B: I'm Bella.
Yes, my little love, that's exactly what you are. You are Bella through and through. How lucky the world is to have you in it.
Last week Sweetie and I took one of the action steps recommended in the Together In This guide to ALZ. We are now in possession of legal documents that relay our wishes to our families and medical personnel if/when the time arises. I thought maybe it would be a relief. You know that gee-that-wasn't-so-bad-why-didn't-I-do-it-sooner feeling like when you finally clean the refrigerator or mop the kitchen floor. Instead I left the lawyer's office feeling weighed down with one more reality check to remind me I'm going to lose my Sweetie in a way that scares me and breaks my heart.
I know, I know wills and powers of attorney and medical surrogates are things everyone should have - ALZ or not. Something Sweetie and I should have done a long time ago. Still it's hard a hard subject to talk about.
For the rest of the week I felt like an old poot. Sweetie slept a lot more than I thought he should. As if I'm his sleep warden. I would have slept more than I should except that sleep warden thing goes both ways. I had time on my hands that I couldn't work up the energy to put to positive use.
Yesterday it dawned on me what was wrong. Besides ALZ. Bella's grandparents have been visiting so I haven't been working. Thank god for text messages and videos. I decided I needed a short Bella fix. From the moment I walked in the door I felt like smiling and crying at the same time. Perhaps its the fairy tale quality of their new home which I affectionately refer to as the castle. We all know nothing bad ever happens in fairy tales so my mood automatically lifted. Maybe the big hug and smile that I got from Bella's Nani outweighed my moodiness. Probably it was the look on Bella's face when she saw me. A little bit of "where the hell have you been?" mixed with "I'm glad you're here." We made our way back to the playroom. She handed me a plastic flower. She asked me to bathe her dolly. And she talked. I don't spend that much time around other 2 year olds and I know it's not good to compare. But Bella sure does hold her own in a conversation.
M: Are you still 2?
B: I'm 5.
M: Five? What happened to 3 and 4?
B: I act like I'm 5!
(I think that came from her ballet teacher).
After Dolly's bath it was time to feed her. Dolly had to sit in the chair. And Mimi (me) also had to sit in a chair, not on the floor, a chair. As Dolly ate Bella said, "Tell me about Eleyiana." She only knows Elly from pictures on my camera, but there's no fooling her. Eleyiana led to Christmas which led to Santa which led to Mr. Jack. When the clock said it was time to go, I'd given Bella a full run down of the people in my life. Nothing had changed. Everything was as she remembered it. As I write that I realize how important it is to Bella that things remain the same.
Let's face it, that's pretty important to me too. The irony of the situation is that I'm the one who often introduces new things to Bella and shows her that things aren't as scary as they seem. When we're at the park I encourage her to swing by herself. I show her that ladybugs don't bite. We talk to crows, run down hills, jump from tables (okay, maybe this isn't a good thing to teach a kid), climb trees, and throw rocks in the river which requires getting our hands dirty.
I cried when I left. Quiet tears that I'd been holding back. I've missed you tears. Gratitude tears. Feeling validated and loved tears. All mixed with up with tears of looming loss that might come from any direction.
I've raised my own kids.
I've been a nanny.
I've been a senior caregiver.
Now I'm a nanny again.
There's not a lot of difference. Babies grow up. Adults grow down. What is different, however, is the perspective. There is joy and enthusiasm as a child learns to walk, talk, think, become independent. There is sadness when an adult's abilities begin to diminish, when that independence they worked so hard to achieve is lost or taken away. Ask anyone who has had his/her driver's licence revoked.
I expect it will be disconcerting in the next year(s) to see how far Bella's mind expands and Sweetie's shrinks. Yet I think there will be some similarities also.
- They will both need a routine they can count on in times of stress.
- They will both need a cheerleader to praise them for their accomplishments.
- They will both need someone to listen to them, hold their hand, encourage them.
- They will both need to dream big dreams.
- They will both need to be creative in whatever form that might take.
- They will both need to stay active and get plenty of rest.
- They will both need someone to say "I love you to the moon, Baboon, sweet dreams" every night before they go to sleep.
- They will both need someone to remind them of their beauty and value.
- They will both need someone to see the light of God in their eyes.
- They will both need to be reminded that no matter what happens they will always be who they were created to be - Bella or Jack.*
I am filled with gratitude for the lessons I (re)learn every time I'm in the company of Miss Bella,