Tuesday, March 6, 2018

Back stories

I'd like to share with you some backstory on the songs picked for Sarah's memorial.

About a month before her death, Sarah noticed the little quote on the Church of Christ's message board as we drove past it on the way to Borger. "This world is not my home." Six words, easy words, that she could read. And she asked me what it meant. Panhandle was her home, and Panhandle was on the world, so what did it mean? I told her they were from an old hymn, one mom used to sing in church when she was a girl. And then, in my off-key, warbling momvoice, I sang it for her. By the time we got to Borger, she had it down. That was one of her gifts, a quick memory and a knack for songs. She had a beautiful voice. Every time we passed the sign, going to and coming back from Borger, we sang the song. But she still didn't understand what it meant. Why isn't the world my home? So I went back to her favorite Bible story, the Easter story. About 10 years ago, a family friend gave her a DVD set of Children's Bible Stories. She watched every single one, but she watched the Easter Story until she had it down verbatim, including the voices. Sarah was also a talented mimic, but that's stories for another day.

We talked about how sad Jesus's disciples were when he died and how happy they were when he returned. And then devastated when he told them he wasn't staying. She recited:

1“Do not let your hearts be troubled. You believe in God[a]; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.”

Her ability to memorize the dialog from a hundred movies still amazes me. 

But I told her we were just staying here waiting for Jesus to bring us to our forever home in Heaven, and she smiled and said, "Okay," and that was the end of the discussion. No arguing, no doubting, just total acceptance of a pure soul. 

So that's why we sung her hymn first. This world was not her home.

The second song was always one of my favorites. Growing up, I loved the melody and message. The deep assurance that no matter what was going on, God had His hand on the rudder and all was well. Even in the deepest grief. Even in my grief. A few days after her memorial, one of Sarah's teachers who had been in attendance shared the story of the song. Please go read it, and then listen with a new heart.

Monday, March 5, 2018

Shit, here goes

I really had no idea when I put this on ice if or when I'd ever come back. I'm still not sure.

When I dropped it, I did it for Sweet Sarah. She had been having increasingly difficult times, dealing with transition, dealing with changes in meds, just dealing with life in general. Leaving Panhandle schools was tough on her, it was her home away from home for 19 of her 22 years; and seeing Baby Queen (who by the way is Jaylee Diana, or Jaylee Bean) go back without her in August tore her up. The meltdowns increased in occurrence and intensity, landing us in the ER a couple of times. We changed her meds, and it got better. For a while. Starting the Borger dayhab  program wasn't as easy a fix as I'd hoped. Change is change, and it's all hard for someone on the Autism spectrum.

Different people, different place, different routine. All sucked. Sarah's anxiety ratcheted up exponentially with each change. She was brave, she did her best to adjust and fit in; but they weren't prepared for the Sarah-sized meltdown that happened just before Thanksgiving. She grabbed one of the counselors, and instead of dealing with her one-on-one, they surrounded her and moved her into the kitchen area where they isolated her until she calmed down. She put her fist through the window in the door, and yeah, that calmed her down quick. By the time I got to the ER, she was in tears and greeted me with, "I'm sorry, mom, it's all my fault." She hated the meltdowns, think scared cornered animal, the complete loss of control. When it passed and she came back, she was always horrified by it, very sorry, and scared of the consequences. It broke my heart every time she apologized for something that truly wasn't intentional or her fault. I held her and kissed her curls while the nurse put 22 stitches in four deep wounds. I told her it was okay, it wasn't her fault, and we were going to find a way to make it better. My first promise broken to her.

After that, she was assigned an autism behavior specialist who came to the house and worked with her twice a week. Angie was amazing, and we could all see a huge difference in Sarah. She seemed so much more at ease. We agreed she'd start back at Borger after Christmas, twice a week for two hours a day, and Angie would be there to work with her and the staff. It seemed like a great plan. The first week of January, Sarah was back. Unfortunately, she carried deeper scars than those on her hand. She was terrified to go back. As much as she could explain, she was afraid they would judge her, shun her (I won't have any friends), or she'd lose it again and do more damage. We sat in the momvan for a good 15 minutes while I assured her they were anxious to see her again, she was going to be fine, Angie was there to help her. She slowly got out of the van with her backpack and lunch box, and I could hear her whisper as we walked to the door, "I'm okay, it's okay, I'm okay, it's okay..."
I sat in the parking lot of WalMart, 7 minutes away, and prayed for two hours. Good reports, she seemed happy, life moved forward. But I don't think the fear ever completely left her. For the eight times she got to go, it was the same routine, "I'm okay, it's okay, I'm okay, it's okay."

During this time, we decided to move to Borger, probably not a good idea to inflict another change, but we wanted to be closer to where the girls were going so they wouldn't have to ride transit or have me drive them. We found a house 5 minutes from the Borger dayhab, a little HUD repo, see Here. We got it for $26 a square foot, and some serious cosmetic renovation. Sarah LOVED it. The first time through, I was on the phone with mom and Poppy and they were laughing at her comments. "Oh boy! Another sink!" (the house has 11 sinks. seriously.) She picked out her room, we picked out curtains and new bedding.  She made a sign to go on her door to let everyone know that was her room. We closed on the house on January 31, the realtor brought us the papers to sign and we signed via FaceTime in front of a notary.

Every one of us had the flu that week, starting with Sarah. Sunday January 28, she developed a deep hacking cough and was having trouble breathing. We hightailed it to the Borger ER urgent clinic where she was swabbed, diagnosed with Flu type A, given chest xrays which were clear, and given an albuterol nebulizer treatment. I cuddled her and kissed her curls and promised we'd get the Tamiflu as soon as the pharmacy opened in the morning. Everything was going to be okay and she'd feel better soon. Second promise I broke to her. We were all on Tamiflu by Tuesday, all running fevers and coughing and hacking, but Sarah seemed to respond well to the meds. She had an inhaler for when her breathing got rough and it really worked well for her. Wednesday night, her fever broke and I was helping her take her first shower in a couple of days. She wrote "I (heart) mom. I (heart) dad." on the steam on the door. As she toweled off, she asked if we could go to Borger beauty shop before the Valentine's dance and get hair, makeup and mani-pedis. Damn skippy, we'll go, we'll have a mom-big girl beauty day. Third promise I broke to her. We kissed her and put her to bed, and then collapsed in our own bed. We were all out before 9. The next morning, we slept in until 8, when Jay woke us up for the day. It's extremely unusual for the girls to sleep in that late, but it was the first night they had slept without getting up coughing every three hours. Now this is the bit that keeps playing on a loop in my head.

It was after 9 and still no stirring from Sarah, and I started to get worried. She has a habit of locking her door from the inside, but I had a store of those little wire "keys" to open it. I couldn't find one of the damned things. I finally found a slender eyeglass screwdriver that worked. I opened the door and felt it. Too quiet, too still, too empty. But she was lying there in her bed, on her back, eyes closed and hands relaxed like she was sleeping. I went to her and knew. And I lost it. Somehow I managed to find my phone, call 911, get her dad who was looking for a screwdriver to take the door off, and uncover her. She'd been gone long enough that lividity had already occurred, she was cold and felt like wax. I kept stroking her face and crying, kissing her curls and willing her to get up. The sheriff came first, then the EMTs, then the Justice to make the declaration. All of this is so sharply burned in my brain, and yet I can't remember her voice. I can't remember what her hair smelled like or her hugs felt like. But I remember every hellish second of that day.

She was taken to Lubbock for an autopsy, and then back home. We had her cremated. I've never been a fan of burial. Or funerals. But everyone wanted a memorial and she deserved that much from us. Her mom and Poppy picked out a memorial box for her, but it didn't make it in time for the service on the 7th, so she sat in my lap. It was truly beautiful for not having a funeral director and considering her dad and I were still struggling with flu aftermath. Floral arrangements poured in, beautiful PINK flowers, two huge peace lilies, and three potted arrangements. Her aunt and grandma gave her calla lily bulbs in full bloom. Sarah called them fairy lilies; she thought the yellow middle was a fairy and she'd tickle it with her finger. Her Miss Betty, who'd been her aide through PPCD and grade school, and Tank (the young man who escorted her at Prom) sent beautiful Star of David lilies with one Pink Rose for Sarah. The gentleman who did her service took so many of our stories of her and gave a very special tribute. We sang Sarah's favorite hymn, "This World is Not My Home" and my favorite "It is Well With My Soul." There were 138 people in the small church on the hill. Every one of them sharing their love for Sarah with us. She only lived 22 years, but she lived a very full life. And she was not afraid to love, evidenced by all who loved her.

I'm still dealing with shock, denial, I still think she's here somewhere and is going to come running in for a hug at any minute. I wake up every night at 3 and roam the house, go sit in her bedroom (we went ahead and moved all her stuff and set it up for her) and talk to her. Every day goes by, and she's still not here. But I am, and I have to find a way back for Jaylee Bean.

I'm going to end this here, I need to go for a walk and clear my soul. But I want to share some pics of her service with all y'all.

Lastly, but most importantly, I want to thank each one of you for your love, prayers and donations. I wanted to send individual thank yous, but your response was truly overwhelming. So much love from so many people. I have a list from the PayPal donations, and bless him, Ken sent all the envelopes to me from everyone who mailed to him. This way, I know. I'll always know, and I'll always love you guys for it. Thank you from the very depths of my soul.