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.


Anonymous said...

Good to have you back. You were missed.

wirecutter said...

"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."

And she had you and your family to thank for that. She was loved more than you know because you've written about her so much. We all felt like we knew her.
I hope and pray that you find the peace that you need and deserve.

James said...

God be with you

Anonymous said...

God honey. If there was anything I could do or say----Ray

emtgene said...

Bless you, dear lady, and all of your family and loved ones. I've never had to bury a child, so I can't and won't say I know how you feel, but I buried my wife of 24 years 6 weeks ago. Loss of a loved one is so hard to deal with. My prayers for you all. God bless you all.

Anonymous said...

Hmmm, looks like ya "been thru some of those [not so satisfying]changes. Loos'n a close One is tougher than war - I know. Makes Some feel a little less fearful of death or a little more eager to get "called back Home". The older I become, the further away is the ground,the more the social/gov stuff unravels, the more eager I am also to "get back Home".

Rob said...

I'm so sorry for your loss.

As parents we tell our kids what we want, what we hope, what will help.
But sometimes reality just doesn't work out like we'd hoped... there are a great many things in my life to feel guilty about, what I told my sick daughter is not one of them, no matter how it ended up. It is enough to just miss her.

Unknown said...

Angel my heart goes out to you. I pray God's peace on you. May God bless you. You meant your promises. You are a good woman and a good Mom. We all think the world of you.

Heathen said...

I've never been one who was good with words of consolation. I never know what to say that would sound right. I suppose stating my thoughts will have to do.

May the gods grant you and your family peace.

Steve Osbun

Alexander said...

You beautiful, strong woman...
My friend Dave lost his daughter Charlie three days before her wedding.
A plaque hangs on his kitchen wall, its John 16:16. "In a little while you won't see me, but in a little while you will see me again."

DoubleTroubleTwo said...

God bless you chickie, I think and pray for you all everyday! Love you!

lofty said...

I cannot express my sorrow, and words are hard to come by.

I am very sorry for your loss and wish you well.

Anonymous said...

Words can never express nor can they explain the depth of your loss I am so sorry for you.

OldAFSarge said...

There are no words for this. Condolences dear lady, may you find peace.

Sarah has.

Someday you'll all be together again.

Brock Townsend said...

Thank you once again and I wish you well going forth.

ÜberFisher said...

My God... I wish you well, this was an awful story.

Jesse in DC said...

May God grant you and your family peace until the day that you are reunited.

Andrew said...

I was worried for you, knowing how much of your life you've put into your children. You are what parents are supposed to be. Thank you for making a beautiful world for your children.

We're here for you. Whenever you need to talk or vent or joke.

Anonymous said...

It's kinda dusty in here. Thanks for sharing with us, Angel.


Storyteller said...

Truly no words. She now has rest, the hard part is for us. But you have all of us to share your burden. God Bless.


Baruch Hashem. (Blessed is G-d.)

I cannot imagine the pain you've gone through. I hope you find some small solace.

With the opening of the door on a life, there is the inevitable knowledge that someday that door will close. We don't know when. We don't know how. But it will happen.

I know I'm a different faith, but if you'll permit me, I'd like to share the Mourner's Kaddish in the hopes that, in reading it, something will touch you and help you heal.

Exalted and hallowed be His great Name. (Congregation responds: "Amen.")

Throughout the world which He has created according to His Will. May He establish His kingship, bring forth His redemption and hasten the coming of His Moshiach. (Cong: "Amen.")

In your lifetime and in your days and in the lifetime of the entire House of Israel, speedily and soon, and say, Amen.

(Cong: "Amen. May His great Name be blessed forever and to all eternity, blessed.")

May His great Name be blessed forever and to all eternity. Blessed and praised, glorified, exalted and extolled, honored, adored and lauded be the Name of the Holy One, blessed be He. (Cong: "Amen.")

Beyond all the blessings, hymns, praises and consolations that are uttered in the world; and say, Amen. (Cong: "Amen.")

May there be abundant peace from heaven, and a good life for us and for all Israel; and say, Amen. (Cong: "Amen.")

He Who makes peace in His heavens, may He make peace for us and for all Israel; and say, Amen. (Cong: "Amen.")

daniel_day said...

My deepest sympathies. I will send you my prayers to find peace.

Jeffery in Alabama said...

Good to hear from you Angel. May God continue to bless and keep you.

Anonymous said...

I don't know what to say. Just know that there are many people who are praying for you and who are here if you need anything.

Sarah, touched a lot of people. You can tell by how many people came to her funeral or sent condolences if they couldn't be there in person. The ancient egyptians believed that every evil act added weight to a persons heart and good deads took away weight. They believed that on a persons death their heart would be weighted and if it was lighter than a feather they got to enjoy the afterlife. I am sure her heart floated off the scales, and she is waiting for you to join her on the deck of the manedjet.


Unknown said...

Love and Hugs to you always ❤️

GruntOfMonteCristo said...

God wills you more peace than this. May you see it soon, and completely. Bless you for what you do with so much love.

Steve_in_CA said...

I am so sorry for your loss. Your tales of your beautiful daughters brought tears to my eyes when I read them and tears now when writing this. Try to focus on the wonderful days with your daughter; although, I know that will be hard.

Critter said...

My heart breaks for you and your family. I'm so glad to hear from you again and my prayers go out to everyone in your life.

Skip said...

Bless you,Angel.

Paul, Dammit! said...

I've been reading for so long, almost from the first time Kenny wrote about you. Wish I had said before how much I enjoyed reading about you and your family, and how your obvious strength and love as a family was an inspiration.

The Father knows his own, and it is for us to grieve, but for those who go before, joy eternal. It's for us now to earn a place beside them when we go to join them. I pray the creator hold you and yours now in the palm of his hand.

Jennifer said...

I am so sorry to read this post. But I hope you know that you are a wonderful mother, and that nothing you could have done would have made any difference. Influenza is a terrible virus, and it often brings down the young and healthy. I am thinking of you and your family, and your journey until you are reunited with Sarah on the last day. Light perpetual shine upon her.

Grog said...

My Condolences, Angel. She had a full life, thank you for letting us know of the last days she had.

May G_D give you and yours comfort in this time of sorrow.

Anonymous said...

God bless. Thank you for your bravery sharing your love and loss with us.
Love to you and your flails from Australia.

Judy said...

Sweetie, I have also lost a daughter. It took a very, very long time...don't be too rough on yourself. Tons of hugs.

Anonymous said...

We all love you Angel. May you find comfort soon.

By definition, a promise honestly intended, that cannot be kept through no fault of your own, is not, not, not a promise broken.

Even if it might feel that way for the moment.


timbo said...

Ive been reading your stuff for many years now.
Im aware, as all the others, of the love you put into raising your two daughters.
The shock hearing of your loss has been extreme.
Both my parents are long gone, and after twelve years, i still feel the pain. Its lighter, less oppressive, but always there.
My biggest fear, as a father of two children, is what you are experiencing.
It will be a long and hellsh time learning to carry on with this loss.
Thank God you have your other daughter to continue to rely on you.
It will give you reason to carry on, and continued purpose to exist.
Love and sorrow to you and your family,

Fjord said...

He has called your angel Home. I'm so sorry for your loss.

Anonymous said...

I am so sorry that this happened to you and your family. You have shared the ups and downs of having an autistic member of the family and the honesty and works shows you cared so much to give her 100% of your love and support to her.

God Bless you ma'am - I hope you are able to put this in its proper place. Thank you for sharing your pain with us - we all wish we were there to help.

loadedforbear said...

My deepest sympathy to you and your family. Bless you all.

STxAR said...

May God hold you tight, and comfort your hearts. I hope you can feel His embrace.

Anonymous said...

I am very sorry.

I pray that God gives you and your family strength during this time and peace knowing that the her fear and anxiety are gone, she has gone home.


nonncom said...

May God bless and keep you and your family.....

Randy said...

my heart breaks

watsonrg said...

Take consolation in the knowledge she is in the embrace of our Lord Jesus and is happier than we can ever imagine in this world.

Anonymous said...

thank you for sharing your family and yourself with us...truly she was, and always will be, one of ours. Bless you and all of yours, and thank you for again sharing the depth of a mother's heart. We all love you.

vaquero viejo

oldawg said...

When I lost a loved one John 16:16 helped but I didn,t really understand what it meant. Would I not see them again until I died? I found out that was not true. The caress of a gentle breeze,the scent of a flower, The sound of her voice or laugh out of the blue, An appearance of her in your mind and you know she is with you every day. As for broken promises, you Angel kept the only one that really mattered. The promise of a mother's love. Prayers to you and yours. Oldawg

Dragon said... sorry for what you have gone through.

Kristy Gen-X said...

Love you. God bless you and lift you up.

Anonymous said...

Some people are just too perfect for such a crappy world.

Adrienne said...

So very sorry, Angel. May you find peace and understanding. Prayers for you and your family.

carol fun said...

So sorry for your loss... I don't think there is a bigger hurt than losing a child. As
the mother of an autistic son I know your worry and anxiety... I too have spent a hours in a car waiting not too far away from where my son was in case I was needed. I'm sending prayers that the good Lord will help you each and every day to find peace. Angels never seem to stay long on this earth, but you will be reunited someday. Hugs.

Unknown said...

I lost my son to cancer.
It's been 14 years.
It still hurts. I still cry.
Less and less as the years pass.
Every time I think of him I still say "Love you Buddy."
And I still hear him reply " Love you too Dad."
It gets easier. Time heals. But it still takes time.
The best advice I ever got was "Your son would want you to be happy."
I know that's true.
Easier said than done.
It takes time.
But you have to move forward.
You have a family to care for.
You have a life to live.
It get's easier.
But it takes time.
Be well, my friend.
Your daughter would want you to be happy.

DavidG said...

Your loss hits my wife and I close to home. Our special needs daughter just turned 20 at the end of January. She spent a week on the adult psych floor at the hospital during February and discharged home only after she stabilized on new medications. Despite all the difficulties, we cherish each day we have with her knowing that life doesn't offer guarantees.

May the LORD bless you and keep you: the LORD make His face shine upon you and be gracious unto you: the LORD lift up His countenance upon you and give you peace.

May Jesus Christ be all to you that you need at this time.

donnie said...

May God Bless You and Keep You. May His comfort be known to You as time goes by.

Terry said...

God Bless you, Angel.

Firehand said...

I... have no words. And I can't write right now anyway.

Without going through a long story, came close to losing son when he was an infant. He made it, but I think I've got an idea what you've known. And I have no words for it.

For what it's worth, you're in our thoughts.

Anonymous said...

I never what to say to someone when they lose a child, nothing seems to help very much. God bless and prayers sent.

Anonymous said...

Your story takes me to this quote:

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
― Lao Tzu

I pray that God's mercy and grace will settle on you and your family like a gentle and comforting mist; that He will minister to you as only He can. May your grieving be full, and, ultimately be replaced with peace and healing.

Thank you for sharing your journey, your courage, and your love.

pigpen51 said...

My tears started to flow the second I started to read your story, and didn't stop until well after I was through. I am sure that I am not alone. I feel like your family and mine are part of each other, having read your blog for so long, and shared some of my own experiences in the comments along the way.

Now I struggle with my wife and her battle with breast cancer, and we draw ever closer to each other, and to God. One of the many names that He uses for Himself, in the Old Testament occurs to me, and I wanted to share it with you. In Exodus, He calls Himself " The Lord who heals."
The Hebrew name is Jehovah-Rapha. I cling to that part of the characteristic of God, in that I am counting on Him to heal my wife, but also to heal myself, as well. And I am praying that He will also help to heal you, and your family, during this difficult time. But even more, I pray that in the coming weeks, months, and years ahead, those of us who think of ourselves as your friends don't forget about your loss, but continue to lift you and your family up in prayer. Because I know that even down the road, when we might no longer remember to pray about your pain, it will still be there, although lessened to a degree, but not completely gone. And we want to always be sensitive to your needs, because you are always there for others.

Bless you, and your family, as you walk through this tough time. You are never alone, God is truly watching over you.


Anonymous said...

I am so very sorry for your loss. I hope you can find some comfort knowing what a full life Sarah had, and that she was well-loved.

Prayers to you all.


Dan O. said...

So sorry for your loss. I don't know what else to say and it's tough to type through my tears. Don't know if I could make it through losing one of my sons. Wishing you continued strength through your healing process. Bless you, Angel.