Stephie 20

Today marks 20 years since my Stephie left. Twenty years. It's forever ago and just yesterday. I can still hear her last breaths. Feel her tiny hand in mine.

The 20th Anniversary for Hurricane Katrina is at the end of this month. It happened a few days after her funeral. She was buried in a lovely purple casket, because, of course. 💜

After the funeral and during the days of Katrina coverage where I was numb and dumbfounded that the Earth was still spinning, the same thought kept running through my head - "We got the privilege to bury her, a gift so many in Louisiana will never receive."

Twenty years later. Countless personal and worldwide catastrophies piled up and piling. I still think how grateful I am that we got to say our goodbyes in such a loving way.

I'm also thinking a lot about the gift of my continued life. That I survived Cancer, when she didn't. I'm surviving every day with my other disorders. I truly enjoy being alive. Even when it hurts.

I enjoy remembering Stephie. Even though it hurts.

Golden Memories

 When I was between the ages of 8-10 (possibly younger) I would make little books for my dolls. I'd illustrate and color the inside. Before I had my big fancy dollhouse that my Mom commissioned specially for me, I would build dollhouses out of Golden Books. Rooms with doors and second floors. The Golden Book Dollhouse would take up the entire floor of my bedroom. I would leave it up for days since it took so long to build. Then, when it was time, I would meticulously dismantle it. With care. 

I miss that quiet play. The focus of doing nothing else but creating something that was mine only. Even if it was only for a short while.

I still have the books that I made for my dolls.

I still have the memories. 

Sun in My Ears

Little girl outside riding her scooter on the sidewalk is going back and forth in front of my window. 

She's singing "E.I.E.I.O" over and over in a loop. 

I can hear her at the end of the sidewalk quietly, all lowercase. Then the closer she gets to my window it's all "e.i.e.IIIIIIII.OOOOOoooo." 

The clacking of the scooter wheels punctuating each letter. 

Glimmers. Always glimmers.

Fo Sho

 Okay, story time: 

The waiter at our go to Shanghai Cafe is a ridiculous flirt and funny.

Last time I was there he caught me doing a check in on my credit card and my big huge balance was on my phone. He asked if I was investing and I just laughed it off and said a hearty NO!

Today, he asked what we were doing for the afternoon after my doctor visit and then lunch. We told him Trader Joe's because they refuse to go North despite all my wonderful advice. Mister Waiterman suggested I just invest in them and then take over the whole company so they do my bidding. 

Then me, being me said "With my name being Heidi, I'd change it to 'Trader Ho's.'"

He thought it was hilarious. 

My Mom, not so much.

Patched

The prospect of doing these Immunoglobulin Infusions for the rest of my life has been, well, a little more than daunting. Having all the STUFF invade my home was the final big push of the reality of it: the pole, the sharps container, a special dresser (albeit cute because, of course) to hold all the syringes, gauze, chucks, tubes, alcohol wipes, and needles and on and on.

I'm still not completely sure of myself when I administer it, on myself. Definitely not proficient yet. I'm lucky to have the best support in my Mom and Jen. My goal is to be the best Self Infuser EVER! I know I'll get there. Even when I fail terribly and the tube gets blocked and I have to replace the needle and poke myself three more times. Frustrating doesn't cover it.

Then there's today. For the first time, in I don't even know how long, I felt, good. 

I did grocery pick up instead of delivery. 

I drove with the windows down and sang. 

The last few days I've had enough energy to cook "REAL" meals. 

What if this actually works?

I've called the meds that I get Liquid Gold, not only because of the price. 

I'm being repaired, Kintsugi style. 

Inside out.

Ask

 My Mom's back is more than pretty awful at the moment. Just getting up to go to the bathroom is a colossal effort. So today, we spent the day in her bed watching HGTV, then writing in a book I bought for her a while ago called "Questions You'll Wish You Asked: A Time Capsule Journal for Mothers and Daughters." We talked, reminisced, and laughed. I cried. 

I clipped her toenails. We all played with Sami. Todd had Sushi delivered for a fun dinner treat. 

I missed her the moment I drove away. 

There are still many more pages to fill out in the book and I'm very much looking forward to them. 

I'm also looking forward to her feeling better.