Friday, May 18, 2018

Happy Heavenly 23rd birthday, Sweet Sarah

This has been that first hard week. Mother's Day and Sarah's birthday back-to-back has literally taken me to my knees a couple of times. My sweet girl would have been 23 today. It's still so hard for me to grasp, that she's gone and I'll never see her again, get big-arm hugs, sniff her curls and give her warm fuzzies, take her to dances, watch her dance with pure joy and abandon. I'll forget she's not here anymore and think, "I need to pick up some whatever for Sarah," "Sarah needs to see this," "That dress would look great on Sarah." I bought her Jello snacks to eat while she was sick, about the only thing she was interested in, and they're still in the fridge. No one wants to touch them, they're hers. Her bedroom is set up, and she'll never use it. The pool is getting fixed next week, we had planned a pool party for her birthday. She'll never swim in it. So many things we planned to do, we'll never get to do them; but mostly I miss her hugs.



I'm going to try to post some Sarah memories, happy stories, to remind me what a blessing she was.

When she was little, probably about 4-5, we'd go as a family to Furr's cafeteria for a special treat. Since I left teaching to be a stay-at-home mom with her and Jaylee, we were broker than the 10 Commandments, and eating out was a special treat. Sarah was never the most patient person, and standing in line was something she barely tolerated. Furr's was torture for her. Shuffle, stop, shuffle, stop, shuffle, stop. One occasion, after about the fifth shuffle-stop, Sarah decided to get the line moving by poking the guy in front of her. In the butt. Big guy. So she poked and he spun around to see who goosed him. Of course, Sarah, being 5 and short, was under the radar; I, however, was eye level. He spun and we locked eyes, him shocked and me mortified. As I stammered my apology, explaining the true culprit was an adorable little girl, my spouse, being ever so helpful, exclaimed, "Oh my God! I can't believe you're blaming our daughter!" I think they set me up. After that, whenever we went to Furr's, Sarah was sandwiched between us.

She was also quite the vagabond. She was born with wanderlust, and it got her in trouble several times. She always wanted to know what was over the hill, around the corner, beyond. It shouldn't surprise me that she slipped away from us to go explore Heaven. She was also Houdini. There wasn't a lock she couldn't master; our doors always had extra locks at the top which helped until she was big enough to drag a chair over. Sarah had come home in the back of patrol cars more before the age of 10 than most criminals do in a lifetime. It got to the point that I'd write down descriptions of her clothes each morning just in case I needed to describe her to an officer. But as nerve-wracking as it was, it was also one of the things I admired about her. She was fearless, curious, adventurous. And she loved to try new things. And I was usually there with her, trying to keep her safe, but at the same time letting her soar.

This last adventure, I didn't get to be there with her, couldn't keep her safe, but man, did she soar.


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.











Wednesday, November 8, 2017

Love and Prayers for Double Trouble Two

I told myself it would take something extraordinary to pull me back to this blog. Dear God, I never wanted it to be this.

A woman I adore and respect is grieving. Karen Hartman-Mulhauser, who most of you know as Double Trouble Two, has faced some really awful breaks lately, but this morning her heart was shredded. Her two sons, Jon and Jacob, 19 and 18, were killed in a horrific car wreck on their way to school. There are no words that can convey the horror, nothing can be said to erase the pain. Plain and simple, no parent should have to bury a child let alone two, especially so young. As a mom, I can only imagine what she's going through right now.

If you can, send up prayers for peace and comfort in this time. And if possible, donate to the burial fund set up.

We're a small group of bloggers, we're family, we're Tribe. When one of us grieves, we all grieve.

Karen's GoFundMe Page

http://www.wkyc.com/mobile/article/traffic/brothers-killed-in-orwell-crash-identified/95-490175537


Thursday, September 14, 2017

Um, hello?

Knock, knock, anyone home? I was just thinking of dropping in and catching up with things. 

So what's been going on...

Teen Queen had her intake evaluation for the vocational day program on the 27th of August. Longest day ever. It was only 4 hours, but a brutally long four hours. Since she hadn't been tested for IQ and other things in the last five years, they had to retest her. Normally, this isn't that stressful, but throw her into an unfamiliar place with strangers who really didn't understand the way Autism works. The diagnostician started with the pattern matching questions; you know, they show you a pattern and you have to match it using colored blocks. Since autistic people think visually, this was a breeze for TQ. She had them figured as soon as they put them down. Like genius fast. Unfortunately, the diagnostician didn't realize that quality didn't translate to words and numbers. The next section was math problems, and without any visuals supporting, TQ was completely lost. The tester was throwing them at her and taking them away to throw another one in a machine-gun pace. If you don't let someone on the spectrum take time to translate the jumble of words and numbers into pictures they can understand, you pile on to their frustration. I once had it explained to me that Autistic language is pictures and to communicate with others they have to translate from verbal language to their language, and then try to figure out how to express the answers they see in their heads into words they can speak or write. It takes time and patience, and she was given neither. I could see her start to lose it, so I interrupted the testing, gave her her noise-cancelling headphones and iPad with the finger-painting app, and gave the diagnostician a quick course on Autism. She slowed down some, but the damage was done. By the end, the state of Texas had assessed her IQ at 74, qualifying her for every program available, but breaking my heart. I know she's so much smarter than what they see. But we managed to get through it and she should be starting the Borger program in October.

Baby Queen is back for her last year in high school. She'll be evaluated in February, and will start Borger next May. She's just happy to have more minions to boss around.

My sight took an unexpected turn into the crapper in August. My right eye is almost completely occluded by the cataract. In three months, it tripled in size and doubled in density. I've had rolling migraines and been in the ER twice for medication. Spouse finally said enough and pushed me to find another eye surgeon. I had my appointment Monday, failed every test spectacularly, and was informed I should stop driving for awhile (cue wirecutter's comments on my driving). My surgery on the right eye is scheduled for Oct. 3, and left eye Oct. 13. Yeah, Friday the 13th. Because of the strength of lenses needed, the degree of astigmatism, and the fact that my deductible is already met and insurance is going to pay 80%, I'm getting everything. I should only need some cheap Dollar Store readers if I need anything at all. I'm thrilled, excited and ready. The pain and strain of trying to do everything mostly blind has worn me down to my soul.

Other than that, things are just going on. Facing another birthday, another year ending and I'm still not sure what I want to do when I grow up. You all were so sweet in your comments and support, I just wanted to let you know how I've been. Hope y'all are doing okay.

Hugs,

Angel


Sunday, August 13, 2017

It's not you, it's me

I have tried to write this post every day for the last week and just couldn't get the right words to come out. Maybe it's because I don't have any words left. I don't know. I just know I suck at goodbyes.

So how should I do this? The way most guys broke up with me? Silence, ignoring me until I gave up and went away? Nah, not my style. Write something so egregiously depraved that makes all y'all hate me enough to break up with me? Couldn't think of anything that bad that y'all would believe, so that's out. So we'll go with the old tried and true break up line: It's not you, it's me.

I don't know what it is, if it's apathy or exhaustion, but I just can't muster enough of anything to share. Everything online sucks. It's sad, angry, horrible, depressing. And you can access it with better commentary just about anywhere out there. The memes don't even make me giggle anymore. I don't see anything funny to share, and I refuse to share anything that's meh. So, we've just run out of things to say to each other, it happens, yeah?

It's not you, it's me.

I started this blog almost five years ago, come this November to be exact. I was in a much different state of mind, different life, different needs, different dreams. It was started in response to wirecutter's demand that I start one to keep me off of his. He was tired of me hijacking it with my witty comments. As many of you have noted, our back and forth was something to behold. But he's lost interest in backing, so it makes it kind of boring for me to go forth. The friendship is still there, it's just one of those dormant things. But a large part of the fun for me was our give and take. I've missed it for a long time, I'm just now realizing how much a part it was of the life of this blog. Life goes on, but sometimes in a different direction.

It's not you, it's me.

This has been one of the roughest summers for me with Teen Queen. It's taken a heavy toll on me mentally, physically and emotionally. The transition from school to the sheltered workshop hasn't taken place yet, and TQ's anxiety has reached epic levels resulting in some of the most violent meltdowns we've ever experienced. My job with her is to keep her and everyone else safe until she regains control; I can usually do this with minimal damage to either of us. But this summer, she's gotten bigger/faster/stronger and I've gotten older/slower/tireder (I know it's not a word, but dammit, it's a word.) I know if this doesn't work, I'm out of options. I can't care for her with the intensity of the meltdowns she's having. I'm almost 52; in ten years, I'll be 62, she'll be 32. 72 to 42. 82 to 52. One of us will die before then. So that's one of the things draining me.

It's not you, it's me.

Just know that I've enjoyed getting to know y'all over the years, sharing my life with you. Sharing ups and downs and laughs and tears. I do consider you friends and family. But it's time to call it a day. They always say go out on top, yeah? I'll leave it up for the archives, but there won't be any further posts.

I wish good things and a few weird things for all of you. Good things to make you happy, weird things to remind you of me.

Hugs to all,

Angel