Thursday, October 27, 2016

On Life, Family, and that time Molly Mae was an only child

"However mean your life is, meet it and live it; do not shun it and call it hard names."  
― Henry David ThoreauWalden


Life sure has a crazy way of revealing itself and reminding me of the lesson to appreciate what we have when we have it, because as my dear friend Allahna says, "You can have it all...just not at the same time." Just this week, Molly said, "now that I'm in first grade, I want to go back to kindergarten, but when I was in kindergarten, I wanted to be a first grader." I said, "So what's the lesson?" and she said, "just go with the flow." Yes, that and appreciate what you have when you have it. 

Anna Cate has finally gotten well and is out of these horrible cycles of GI troubles that landed her in the hospital five times. She was so proud to send me this picture  that the inflammation and swelling finally went down!!!

Anna Cate (and my family) persuaded me to let her stay in Centerville through Halloween and I'm happy that they all get to have some good times there. She has loved the special times with her cousins. 



Mom sent me this picture of her in her costume. 

We are so grateful to my family for their sustained concern and care for Anna Cate, and ensuring her recovery, with he help of amazing doctors at Vanderbilt Children's Hospital. As my brother and I concluded, my father has been uncharacteristically compassionate and my mother has been uncharacteristically rational. It reminds me just how we rise to the occasion for family.  Anna Cate returns home to us in Virginia next Wednesday, November 2.

Life has certainly been odd as we've adjusted to a family of three with BJ home recovering from surgery. He cleans, prepares dinner, and organized the play room.  I like having a house husband! :) His surgeries went well. The first surgery  was the major one where the electrodes were placed, and when they hit the right spot, the tremor stopped and he became emotional on the table. Here is his description in his words the day of the surgery:

"In an operating room at Georgetown this morning, "Amazing Grace" was sung. Literally the nurses, my surgeon, my anesthesiologist and I all sang. My anesthesiologist and surgeon have never performed this surgery without each other. Coming from Vietnam, a Buddhist himself, this was the first song the anesthesiologist sang at the church that sponsored him to come to America in 1983. He said it was his favorite song and he said that was a big day for him when he came to this country and said,  "this is big day for you so let's sing Amazing Grace." Once we knew the surgery was a success, we sang. They say it is a tradition for this procedure for people to sing but no song has ever sounded so sweet to me!!!"

The next week, he had the receptor placed in his chest, 

And on Monday, BJ visits his movement disorder specialist to get "programmed," and we can start to see benefits from the whole ordeal. It has been an unusual, difficult Fall and as we are going through the motions for Molly, I'm finding myself thinking just how precious she is. 

Pretty much, I think she is such a perfect only child. She has been kind, patient, strong and in her element. 


But the truth is, there is definitely someone missing in the picture. 

Soon we will be together again, but in the meant time, we are not letting time pass without enjoying life, and we are thankful to Molly and her spirit for constantly reminding us of all we have to enjoy.


“Hardship often prepares an ordinary person for an extraordinary destiny.” -CS Lewis


Tuesday, October 4, 2016

Cycles and Canes

We left Virginia, and thanks to our dear friends, Robert and Melvin Mays, Daddy Doug came to get Anna Cate and me to fly in a private plane to Centerville. Anna Cate's best friend Leana came to see us off. 





It was hard for me to split up our family, but I think it is what's best for Anna Cate. 


She said goodbye to her Daddy and won't see him again until after his surgeries.







We arrived in Centerville and hoped to find answers and healing; she has had some good days, but they've turned bad; we have been on this roller coaster before but I have hope that with Vanderbilt's direction, we will get out of it. Since August 15, Anna Cate has been on two week cycles: one week in the hospital, one week out. She has a couple good days, but then her bowels stop, and she is in miserable pain. After visiting Vanderbilt, I have hope that with a certain diet their dieting gave her, we will see improvement.  Anna Cate needs to stay longer than a couple weeks in Tennessee, so we can make sure she holds on to the good days for longer and is under Vanderbilt's care for a few weeks. They have an excellent pediatric GI clinic where child psychiatrists and dietitians work directly with the doctor. The doctor gave me another name for the problem, which is all still in the same family of names we were given at VCU: adnominal migraines. Since we began with Vanderbilt, she has had bad days, good days, and then horrible days and as of Sunday night, she is back in the hospital. 

Last Wednesday was a hard day. It started with checking my voice mail and getting a good morning message from Molly, and when she said, "I hope we can talk after school" my heart was ripped out and tears flowed. 


The decision to keep Anna Cate in Tennessee for several weeks was not an easy one for me, and I feared it would be a harder one for BJ, and it would feel like my family and I were ganging up on him and hijacking his child.  But he surprised me and said, "I agree; she needs to stay there and get well -- I trust your and your family's judgement."

I spent significant time dealing with her school issues. I set up ways for her to learn the curriculum via google Apps for Education with enrichment from Daddy Doug.

When Anna Cate went to check her school email account, it was deactivated. After calling the school, I found out that when I signed up for school at VCU, she would be un-enrolled with Spotsylvania, but the only way to access it is to be re-enrolled, and the only way to enroll her is in person, which is impossible. We set everything up with the teachers to learn via google classroom, but after talking to her teachers, instructional technology and her principal, we are continuing to "home school" her using the classroom curriculum available by gmail. 

The logistics of her illness had been crushing, so I went running, a place I can always get some perspective.  The only activities I feel like doing are running and yoga. I bet I've lost so much strength because I haven't been able to pick up a weight, but the thought of picking up something heavy, while usually invigorating, makes me want to throw up. I wonder if it is because I already feel so weighed down. 

I can always relate metaphorical comparisons of running to life, and a long run in the country did not disappoint. 

Jus stay on the path, get out and see the largeness of this beautiful world. Anna Cate is going to well. It might take a while.  
Take Care of myself and just keep running. 

I noticed these flowers blooming on the side of a cliff. If they can hold on and even flower into vibrance,  I can too. 
"I took a walk in the woods and came out taller than the trees" -Henry David Thoreau

You can't even tell in this picture how steep that hill is that I'm running up. Maybe in the long run, the hills we are climbing won't really be seen in the same way as when we are on it. I've also noticed when I'm running, I never notice when I'm going down hill, but I always notice the incline when I'm going up hill. Why we do we notice more when we are struggling? Shouldn't we notice the ease of the down hill, the easy times?
When this truck stopped and parked on the road I was running on, I was a little alarmed, but was relieved when my friend Jennifer jumped out to finish my run with me! We ended up walking so we could talk, and she offered to help Anna Cate after I go back to Virginia.

Before I left Tennessee,  I found a yoga studio, ran again, and enjoyed some time with my nieces in between all the logistics and care for Anna Cate. I find myself so incredibly grateful that in the midst of these dark days, I have my parents. I thought as horrible and bad timing this all has been, it gives Kitty and Anna Cate such special time together and I was blessed to behold Tula for hours. 
 

 


  
So today, I'm back in Virginia preparing my mind and heart for BJ's surgeries, and trying to process being so sad about Anna Cate being back in the hospital.  This morning, I sat in my pajamas and watched Brene Brown on Oprah talk about her latest book, "Rising Strong."It was exactly the type things I need to hear.


We craft love from heartbreak . . .Grace from disappointment . . .Showing up is our power. Story is our way home. Truth is our song. We are the brave and brokenhearted. We are rising strong.”  ― BrenĂ© BrownRising Strong

Thursday is his "BIG" surgery, and in the midst of fear and sadness I'm finding joy in thinking about Molly's trip this week. Last week, she was invited to go on an adult trip to New England with Patti and other church friends, including her Mum Mum. It is not a secret that Molly prefers adults to children, and our friend Tina said it perfectly when I explained the trip to her, "these are Molly's people."

So, yesterday we took her to the church parking lot at 5:30 to begin her adventure. MumMum had plenty of activities planned to help her pass the time, including books and journaling so Molly can do school. (Marian was a 1st grade teacher) Patti packed her a bag and her teacher sent books and work as well. 
She looked so happy to be going!
 Patti's sister let her make some jewelry. Marian sent me this picture of her sleeping on a soft spot, Marian's lap.

 They made it to Plymouth last night. 


This morning, they visited a cranberry bog. 

When I got these pictures, I noticed Molly has Marian's cane!!!  Horrified, I texted and said, "did she steal your cane?" 
 And the response was, "yes, but I used her as my cane. . .hand on her head." 
I feel like there is a sermon there. I went to sit outside to write my thoughts about life and these pictures, and on my porch I found this lovely delivery from my friend Carolyn.
We've received love and support in many ways, and I'm constantly finding comfort hourly: this afternoon, my best friend is bringing me coffee, and our friends Susan and Dan are taking us to sushi. We are spending tomorrow night with my friend Dorinda before BJ's surgery. My friend Laurie is coming to sit with me Thursday. Back in Tennessee, Jennifer is going to relieve my parents and spend the night with Anna Cate; my friend Whitney, who is traveling this week, offered to drive three hours to come stay with Anna Cate to give my parents a break this weekend. So many ways we are being sustained, keeping me up, when I might lose my footing. 


Today, my prayer in the midst of the struggle is: 

Oh Holy Spirit,  Thank you for all the ways I've been shown Your love and support in these dark days, for the angels among us who are my canes. Make me worthy of all this support and a strong cane for BJ in the coming days. I see how Molly is using a cane to hold up MumMum -- make me as bold.