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January 18, 2021 / paperkids

No distance.

“What we are recommending for Emma at this time is residential placement and that will most likely be out of state….” I know there were many other words that the special education director said that day, but these fell on me like an avalanche which swept away any semblance of control or composure that I had maintained to this point in the meeting. I can only remember the almost immediate sound of my own sobs as they burst forth from some deep, gutteral place inside. I have been to a lot of meetings over the years and I always managed to keep a determined yet cheerful composure. But I sat there completely broken in pieces, and I could not get myself back together.

The table was completely jammed with chairs and faces of teachers, therapists, district liaisons…all who were looking at me in silence and sympathy. They all seemed in that moment to have a deep and heartfelt understanding. Most knew Emma well and they had all shared at some point in the desperation of wanting to help her. This felt like the summation of all of our failures to make it work. To keep Emma in school. To keep her from injuring herself and others, never mind educate her. More than anything in that moment, it was my failure. My tears seemed to spill on in a never ending stream that couldn’t be contained as if I were making up for lost tears from years past. I felt the weight of their stares as my red face contorted uncontrollably. I don’t know how long I sat there crying as tissues were passed, the hand of my mom gently rubbing my back. I was very thankful she was there. When I finally got myself together enough to glance up, the woman from the district who had spoken had a deep look of compassion. I had fought hard in other meetings with steadfast optimism, but this one was different. Emma had injured staff. She had injured students. The pain this had also caused her was weighing on my heart heavily and I blamed myself for trying so hard to keep her there.

This meeting was held to decide what the next step was for Emma at school. After the incident when she injured staff, she was put on home study indefinitely. All day at home, I kept her busy with schedules, timers, walks, and tried to give her everything she needed and tried to get her out as much as possible. But that was very rare due to her aggressive episodes. I sometimes took her to Starbucks or the grocery store nearby, but that was rare. Even with her entire day scheduled out in ten minutes increments of time, she was still having about 8-10 rages a day where we got her on the couch and rode it out with her, keeping her and everyone else safe. We had it down to a kind of science at this point, but we were always on high alert. I felt as though I was operating on a super natural fortitude that God had given me to keep me well and energized. But it all felt fragile. I rested in that beautiful truth that God had told me after Emma’s first hospitalization : “She belongs to me.”

We prayed over her every day and many others joined us in praying continually for a breakthrough. Emma was still strong in her faith and kept the best attitude possible. But I sensed a depression and weariness coming over her as her world grew smaller and behavior intensified. I wondered how long we could maintain this crisis. I can’t really put into words how hard each day was and how sweet God was. Even through Emma’s screams, all the broken things, sleepless nights, exhaustion, aggression, and OCD’s, each day we fed on the daily bread that He gave us. His manna was enough for each day. Even with our life hanging in a very delicate balance, I was glad to commit every hour to my beloved Emma. Even in the hardest moments when we were at a breaking point, there was nothing I would have rather done than care for her.

We were so desperate to help Emma that we even admitted her for a second time in the UCLA Adolescent Psychiatric Unit for another grueling two weeks, which ultimately failed. That stay was just hard and sad. She was already on the meds they gave her the first time and there was little they could do. So when that second hospitalization failed to stabilize Emma’s behavior, residential placement was the next step for the school district. And I didn’t really realize that until this moment in the meeting.

So there we were. My heart shattered in pieces and a very serious choice that lay before us. Of course, the obvious choice to residential placement out of state was “NO. WAY.

I went home that day with a migraine from crying and a great determination to find another way. There had to be another way and the school’s recommendation was not on the table at all. Jared was appalled at the idea of sending Emma out of state and fully agreed with me and so I swept it clean off and out of the realm of possibilities. Instead, I got busy at work to find other options as a new sense of optimism arose. One thing was certain, Emma needed structure and she needed something more than just being at home all day. Even with my schedule, she needed more support. Therapists were coming over, but even that had become hard because of her episodes of rage. I didn’t want her to attack or hurt anyone else. She didn’t want that either. Respite could no longer handle her and so it was almost impossible to have anyone else but us with her.

Many ideas came and went and circled around in my mind. I even looked at a private school that might be able to support her, but it was just too far. Emma could barely ride five minutes from home due to her unpredictable episodes. My mind went into overdrive thinking over options and all seemed to hit a dead end. I didn’t say anything to Emma about what the district had said. We would go on our afternoon walks together in the neighborhood on the same exact path every day and I was thankful we still had that. We would just keep on walking down this path and hope for brighter days around the corner.

One day, the district sent me an email : “Great news! We’ve found a school placement for Emma …. ” I looked at the email and my stomach dropped. I wanted to just delete it right away and push it out of my mind. The school was in Kansas. Clearly, the school doesn’t understand that I am NOT sending Emma out of state. Why are they even still looking!? I felt upset and irritated and devastated at even the thought, which was completely off the table as far as I was concerned. Not even an option.

One day, I met a dear friend out for breakfast. She’s a woman of great faith and strength and someone I greatly admire who had been through great loss in her life. I almost had forgotten that she had experience with out of state residential schools with her own child. When I told her about the meeting and that I was trying to come up with a different option, her response floored me…

“Why don’t you want to do Kansas?” she said it in such a direct, matter of fact way that it left me speechless. I wanted to cry actually. There was something that I didn’t tell her about what she said to me that day; I knew it was God speaking to me.

After that conversation, I prayed more earnestly to God that He would lead me in this decision. After all, I only saw such a short distance down this path ahead of me, but God saw it all. In every area of my life for the past six years, I had committed my way to Him. He had taught me so much about faith and letting go. He had delivered me from depression and anxiety and had given me the strength and energy to keep on caring for my children. He gave me such such joy in the midst of adversity. I knew that Emma belonged to Him, but how could I let her go like that..… this was another level of letting go and I couldn’t even fathom it. No, I could not.

I finally decided to tell Emma about this option to see what she would say. Maybe she would want to go and maybe she would have some input that could ease this decision looming over us. I began to throw the idea out there and bring it up when we chatted and she typed very quickly and seriously. Emma was firmly and decidedly against it. This made the idea even more upsetting to me. There’s no way that I could do this to her. Who would she even type with and who would care for her like me? The thought sent a shiver through my soul.

Time went on and we were no closer to a solution for school. Emma’s rages continued relentlessly. Each day we hung on to faith, hope and love. I could not, however, stop thinking about Kansas. God had put the idea in my mind like a small seed. I looked up the school and read some favorable and unfavorable reviews. There was a picturesque barn on campus and I kept seeing it in my mind. One day, I decided that the only way to put this to rest was to go there and see it for myself. So my friend, Gloria and I made the three hour flight and one hour drive through the green, rolling hills of Kansas to the school, which was located in rural country town. We were fortunate to meet with the head psychiatrist and therapist and everyone was very warm and gave us a great tour of the campus. There was never a point where it felt right. I wanted there to be a sign that made me feel sure. But I only felt sadness and anxiety. I only felt Emma slipping away and my grip on her tightening.

Gloria and I went into a local coffee shop afterwards which was in an old historic hotel in the charming downtown square. Gloria seemed very positive about the school. But I couldn’t really talk about that. As we walked around the shop to look at the decor, I noticed a red Bible laying right there on the coffee table by the fireplace. “Look, Gloria! You’d never see this in L.A.” She agreed and we both beamed at the sight. We left and headed back to the airport. I didn’t have much to say, but much to ponder.

One day Jared went on our daily walk with Emma and I. Out of nowhere this little bird came fluttering down and hovered right in front of Emma’s face for several seconds. We all stood there astonished, watching it as it hovered a few inches from her face and then watched it flutter down and fall in the middle of the road. I ran to it, bent down and cupped my hand over it on the road. I thought of my childhood and how I had rescued this little bird that was injured. I thought of how that little bird died. I uncovered it and discovered one eye was sealed shut. I had a moment of wanting to take this little disabled bird home and care for him. But I felt that wouldn’t be right. The little injured bird flitted into a nearby bush. It seemed impossible that he should survive. Suddenly, I felt God speak to my heart : “I feed the birds of the air”. It was a reference to the words of Jesus in Matthew 6:26. My heart soared with these words. I stored it in my heart. I knew He was reminding me. He was preparing me.

“I think this might be a really good thing, Emma” I could barely believe my own words as I said them, but I kept them as upbeat as possible. As hopeful as possible. Emma eventually began to come around to the idea of something new in her life. She began to warm up to the idea of change and considering how hard and small her life had become, I didn’t blame her. Even so, she was scared and I was, too.

We all were unsure and could barely believe we were choosing this option, once so removed from possibility. But that’s what God often does. He asks the impossible. And then He does the impossible.

There were loads and loads of paperwork and steps to be taken. Friends visited us to say their goodbyes to Emma and bring her gifts. My friend, Renee took beautiful photos that almost didn’t happen because things were so hard with Emma. Im so thankful that she insisted and captured such beautiful family photos that I treasure deeply.

An agency came to assess Emma for how she would be transported to Kansas. There were many options, but only one that was appropriate for Emma and her behavioral needs. She would fly on a private medic jet with a team of specialists. And she would fly without me.

Even though I was anxious for this to go forward and at the possibility of it helping Emma, I felt such a sense of grief and overwhelming uncertainty. I was giving my precious daughter to strangers for possibly the next three years. She would never come home in those years. I would have to fly halfway across the country to see her and chat (type) with her and kiss her face. I would let others care for her – shower her, dress her, make sure her covers were just right, comb her hair, handle her episodes of rage, and encourage her. My heart melted into an ocean of both fear and sorrow. How could I do this?

One early morning, the motion detector went off and that meant that Emma had come down stairs. The detector was a a life saver because Emma often came down in the middle of the night and it was dangerous to leave her unsupervised. It was around 4am and I came downstairs to where she had plopped on the couch as she always did. I laid down on the other couch and somehow we both fell back asleep.

God gave me a dream. In my dream, I was standing in front of that coffee shop in Kansas. The same charming old cafe Gloria and I had gone to. I walked up the steps of the porch and walked inside. I walked over to the coffee table and looked down at the red Bible resting there. In that moment I felt God speak to me in my dream.

He said : “I am here.”

Immediately, my eyes opened on the couch and I felt this thick presence – a blanket of peace – cover my whole body like a hand pressing down gently on me. It was the warm hand of God over my entire being.

Those words have lingered over my spirit ever since. He had given me the words that I so desperately needed and that I would cling to in days to come. I Am here. He would be there with her just as He was here now with me. We would always be together. There was no distance in Him.

“It’s ok to cry now. Just let it out, baby.” I remember those words because I’m not sure I had ever heard mom say them to me before. This woman. This woman who had lost a child was comforting me sweetly as we stood in the quiet living room. She pulled me into a loving embrace and I let myself fall into those loving arms. 

The house was too still and empty now and the couch where Emma lounged most of the time rested vacant. Just moments before this room had bustled with a whole medic team who wheeled a gurney right in through the front door and helped fasten Emma in snug to prepare her for the big trip. We smothered her with kisses, gave her a pair of sunglasses and her soft stuffed lamb that she had on her bed. I watched them as they gently lifted her into the ambulance. Jared and I stood in the street, smiling and waving and blowing kisses. The pit in my stomach deepened as they closed the doors and drove away. They rounded the corner, out of sight. She was gone. 
In my mind, I pictured the ambulance driving through our neighborhood, then inching through LA traffic. How would she be? I pictured her boarding the small private medic jet surrounded by a team of kind strangers. Was the nurse really equipped to handle her? And even though we had prepped and chatted about this move for the past month, I wondered how she was feeling inside. Was she scared? Was she ready for this? Was I ready? I pictured her landing half way across the country in a small airport in Kansas and finally pulling up to her new home and school. And then I pictured that Bible on the coffee table which I’ve seen on every visit to see Emma for the past year and a half. And I heard again the words that He spoke to me that early morning right before He awakened me. Those words that covered me and carried me through all of these painful months apart.

“I Am here”. 

He is there. He is here. With us. Forever. 

The front of the coffee shop on our first trip as a family to see Emma in Kansas.
Emma and her grandma at a rental house in Kansas.

April 2, 2020 / paperkids

Letting go.

IMG_6360 (1)Emma kicked hard and put a huge mark across the wall with her foot. Within ten minutes of the first visit with our new psychiatrist, she was having a full blown rage episode. Jared and I quickly dove into automatic-meltdown-management-mode. We surrounded Emma on the couch, protecting her fist from slamming into her head and guarding her body from any harm to herself, and anything or anyone around. These episodes had become a very regular occurrence in our home the last couple years and we fell into handling them with a strange kind of ease and methodology that comes with rigorous repetition.

In other words, we did this A LOT.

And this wonderful woman took it seriously. Even we weren’t really taking it serious anymore – it just had sort of become our normal. The aggression, the self injurious behaviors, the OCDs, the restlessness, the sleeplessness – they had somehow become our normal over the years. We kept adding medications, but nothing seemed to stabilize Emma for long. We had been to several doctors, but no one had ever picked up the phone for us like this. Without any hesitation, she firmly, but calmly called UCLA and knew exactly who to call and what to say. “Yes, I have a patient who needs to get in there…”

A couple of weeks, a three hour wait in the ER, and a shot of Thorazine later, we were standing in a bare, but peaceful room in the UCLA Adolescent Neuropsychiatric unit. It reminded me of one of my college dorm rooms with the exception of a soft lavender color on one wall. It even had its own bathroom. Emma was calm now and as we sat there on the bed looking at the room, it suddenly began to hit me – she would be here for more than just a couple of days. I’m not sure why I hadn’t considered that before. Honestly, I’m not sure I had thought past the wait in ER. That seemed traumatic enough. I never even thought we’d ever get this far in there!

She was on five different meds when she entered, which is why it was nearly impossible to treat her. She needed a complete med reset and it was way too dangerous to do at home with Emma’s aggression. This is what I had hoped and prayed for. HELP. But it all seemed impossible until we got the call that a bed was available.
I knew in my heart that this was answered prayer, but it felt unsettling. I was going to have to leave her there and let her stay for an uncertain amount of time. How long? Wait, were we really doing this?!!

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Emma had never been away anywhere. Visiting hours were only a couple hours a day although in our case they would give us more time. She’d never slept anywhere else other than my parent’s house or on vacations with us.

A pile of paperwork kept me distracted from the deepening pit in my stomach. As we finished it up and prepared to say our goodbyes, I could feel panic rising up. This was one of the best hospitals in the country, but we didn’t know any of these people. They didn’t know Emma and no amount of questions on some forms could change that. Thoughts and worries over the small details of her life erupted over me … Who would shower her? Who would brush her teeth and change her? No one there would be able to type with her. Who would read her movements and understand her few words? Who would be there in the middle of the night when she wakes and roams around? Who would help her in the bathroom? Who would know what a fun loving, intelligent and sensitive girl my Emma was? …
Who would love her?… 

Jared and I were escorted out of the unit by a nurse through two heavy security doors. I’ll never forget the sound as the second one slammed shut behind us, echoing into the sterile hospital hallway. I looked at Jared and I knew we both felt numb and very empty as we walked silently to the car.

I wanted to hold onto hope, yet every time I visited Emma, I felt crushed. I kept expecting to feel better about it. But every time I walked in, something upset me. I never knew what I’d find. Yes, her room was looking more and more like my college dorm room every day. Clearly, she was exercising more independent daily living skills. And she was looking expressionless and lethargic due to sedation. The staff and care were top notch and everyone was incredibly nice and professional, but I couldn’t get used to leaving her with strangers. She was often asleep in her room when we arrived, which was yet another strange thing to see. Someone was always just outside the door or helping her with her daily routine, but it wasn’t us and that just felt so unsettling somehow.  She was 15 years old, but I had no experience leaving her anywhere – not even alone in a public restroom. Every time we left the hospital, I felt like I was leaving a piece of myself behind. So many days I wanted to yank her out of there. I was glad that they had double security doors to keep her inside and safe, but the weight of that barrier crushed my heart every time I walked away.

Even though her smile had faded with the heavy meds, whenever I’d ask her with her iPad, she’d always type a very steady Emma response: “It’s very restful.”

Really?? Restful? I’d go crazy in here!

IMG_4946I always responded with optimism, but in my heart I felt anything but restful in there. I just wanted to burst out in tears there! After being there just the two hours, I wanted to escape that room and run out into the sunshine and fresh air. I wanted to run away and take her with me and never come back.

Didn’t she want that, too?!

Her world had become very small. She never wanted to go outside on the deck despite the times I tried. She wasn’t joining the other kids in group because of her impulsive behaviors and aggression. Every day I’d bring her something new for her room. I admit I went a little crazy with the Finding Dory theme and kept bringing toys and pillows and posters. That is, until one day when she typed “Maybe less is better.”

Her words always gave me encouragement and a smile in the moment. But this feeling inside of me lingered and grew over the days. Where was the hopefulness?  The house felt lonely and her room was empty and there was this feeling that came over me. It came over all of us as the days turned into weeks. I’d felt something similar before and one morning I realized what this feeling was.

IMG_5002I thought about that day we left the hospital after my younger brother Tim died in a sudden accident when I was Emma’s age. We came home without him and I wondered how my mom and dad came home at all after that. This in no way compared to that and yet, there it was lingering. Grief. And I wasn’t expecting it at all. A huge part of me felt restless and desperate. A huge part just felt gone.

One day I was laying on my bed which felt extremely strange because it seemed like every moment I was on high alert with Emma, making sure she didn’t hit herself, or grab someone or get into something dangerous. But now I didn’t feel her presence in the house. I would normally type with her and we normally go on walks together in the afternoons. I dressed her and bathed her. Caring for her was such a huge part of my life and I didn’t even know what to do with myself now that she was gone. This sorrow and fear had wrapped itself around my heart and I just couldn’t let go.

As I lay there on my bed, I noticed a message from my friend, Cheryl. She told me she’d been meditating on God’s word that morning and she thought of me when she read Psalm 4:4. So I quickly opened it up in my Bible app and read it…

“Tremble and do not sin; when you are on your beds, search your hearts and be silent.” (Psalm 4:4)

Be silent.

God completely flooded my heart in that moment. Those words pierced my heart and left me without any other thought – without any fear or worry. There was only silence. There was only a trembling of my spirit before God. It was that deep inner stillness that only He has ever brought me. It was as if God had reached down his hand and said, “She’s mine” and with the strength of those words, He lifted a heavy weight from my heart. A burden much too enormous for me to ever carry. I felt Him say in my spirit –

When are you going to trust me, Sabra? When will you let go?  She belongs to me and I love her. You have to let go.

I sat up. I couldn’t help but laugh. In less than a minute, my heart had been filled with pure joy!

Ok, God. Okay.

I stood up from the bed and felt lighter than I could ever remember feeling. The heaviness of fear and grief was gone. Peace and joy had taken its place.

Over the course of two weeks, Emma was taken off four pretty strong medications and one very heavy med was added. I was proud of her. She handled this independent experience so gracefully with such incredible peace and strength. No doubt it was from the Lord. She was released after two weeks and a day and was home a couple of days before Christmas. Having her home at last was truly the best gift I could ever ask for. But what God showed me through this was an unexpected gift. He gives eternal treasures that we didn’t think to ask for but which we soon realize we cannot live to the fullest without.

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Emma’s life changed drastically after the hospitalization. She began sleeping through the night and her behaviors significantly diminished. She began in home behavior therapy which helped her regulate herself. Her world really opened up and she even began to type with her therapists and teachers at school using arm support, which was huge! One of her therapists, Lizzie, became her best friend and Emma began to type with her better than she did with me.

One day we were out to lunch with Lizzie and we were talking about Emma’s stay in the hospital. I was telling her how it was for me and how hard it was letting go, but that Emma seemed to find it restful. Emma grabbed Lizzie’s hand and began typing with determination.

“Yes the hospital was the best experience of my life you really don’t understand mom.”

IMG_7511Again, I was reminded that she has her own journey that I don’t always understand. Those words that God spoke to me that day on my bed rang in my heart again:

She belongs to me and I love her. 

This life isn’t perfect and we have very hard days still, but I will always rest in that truth which will never change.

Emma turned 16 years old that March and she didn’t want a big party. Just a nice dinner out. One of her wonderful behavior therapists, Kari, got her a balloon and flowers and I had an idea to make the day memorable.

“Emma, sometimes people release balloons in the sky to symbolize letting go of something. Is there something you want to let go of… or give up to God? We could write it on the balloon and just let it go.” Emma reached down to the iPad and began to type.

Emma : “Yearning to let go of earthly treasure in place of heavenly treasure.”

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Oh this girl. When I think of the things that Emma desires, it’s just the little things that everyone takes for granted. She’d love to just sit and chat with a friend or answer a question with her mouth when someone asks her. These are her earthly treasures.

I took the balloon and wrote “Earthly treasure” on it. We went outside and I held Emma’s hand over the balloon so she wouldn’t let it go quite yet. I thought of how I was letting go. If I were to write down my treasure, what would it be?

It would have to be her.

We said a little prayer and let our little balloon go. We’d never see it again. It floated up, up, higher and higher, and we both watched it like two kids filled with wonder. We watched it until it lifted up over the treetops and out of sight. Up into the heavens.

 

July 29, 2016 / paperkids

Semper fi : “Always faithful”

One year ago today, my dad died on his birthday. It seemed like something he’d do. He would think that it was so cool. A year ago,  I was back home, sitting in his recliner with his beloved chihuahua Marty, both of us gazing at each other with deep sorrowful eyes. I wasn’t planning on flying out from California to Florida to see him before he died, but at some point toward the end, it hit me.

He’s dying! He’s really dying.

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I took a flight out that very day in order to arrive on the morning of his birthday. When I had made the decision, desperation rose up in my heart. I must see him. I need to hold his hand one last time. I need to be there. I want it so badly.

Mom told him that I was heading out and his eyes got big. His life was fading very quickly, his whole face covered with tumors. He didn’t want me to see him like that, but I didn’t care. I didn’t care what he wanted – I had to see him. I knew that despite his stubbornness, he would want to see me, too. He would want to feel my hand on his.

I felt the hours ticking by as I waited to board the plane at LAX. I would have a layover in North Carolina. I knew I wouldn’t be able to sleep, but I decided to buy a neck pillow anyway. It was hot pink.

My seat was at the very back of the plane in the middle of course, because I’d booked it same day. It didn’t bother me at all because after flying for years with two children with autism, a solo, stress-free flight was great no matter where they sat me. The guy on the end stood up to let me in. He never looked at me, head down. The guy next to the window was slouched down with his hat pulled down and earplugs in. His arms were folded across his chest and he never glanced over. They both wreaked of alcohol and I’d imagined that they probably were college kids heading back home somewhere. Or maybe they’d had a layover in LA from Vegas. Whatever the case, I knew we wouldn’t be having any conversations, which was fine and normal really.

During the flight my thoughts were racing. My mind was running so far ahead of this plane, where I was already there and how cool was that – I would be there on his birthday!! I was so glad that I’d made the decision to go. The neck pillow was a good idea, but I couldn’t sleep. How could I? Dad was dying. It was hard to imagine a world without him in it. I always understood dad in a way that I’m not sure anyone could. I understood his complicated and unique qualities and even adored them. And I loved him deeply.

As I tried to sleep, my mind began to drift to the guy on my right. He squirmed and shifted and I’d glanced over to see his eyes closed, face turned down. I closed my eyes again and I began to feel an overwhelming urge to pray for these two young men – these two strangers to my right and left. I began to pray – to myself of course – and my prayer became deeper and deeper.

Bring them peace, Lord. Bring them comfort.

And then my prayers began to turn to dad, and I just felt the incredible peace of God wash over me. I felt the presence of God so powerfully in that moment that it was as if I were rising to Heaven itself. His presence flooded my soul.

I looked around to see that no one was aware of this glorious spiritual ecstasy. The plane was dim and the people were quiet. I glanced again to the guy on my right. He was trying to sleep with his head propped up on his hands. He looked beat down. When his eyes opened, they were droopy and his face was sullen. He seemed annoyed and on edge. And very unapproachable. Little did he know of my intense prayer for him. If he only knew, but I definitely would not be telling him! I was certain of that.

Then I felt God speaking to my heart. Give him your pillow.

What?! Um, no. I brushed off the nudge because, after all, I really needed this pillow. But mostly – No, I can’t talk to this guy! His whole posture screamed, Don’t talk to me. Don’t even look at me.

But the nudge got stronger and the next time he shifted in discomfort, I went with it – I put my hand on his shoulder and said, “Hey, I want you to take my pillow.” His eyes opened startled as glanced over in surprise, “I’m fine…”

“No, here I want you to take it…” And I took my hot pink neck pillow and before he could even respond, I’d wrapped it around his neck. Now his eyes got really big as he shrunk away from my touch. It was then that I came to my normal “appropriate” human senses and realized what I was doing

Oh God. What did I just do? I just totally and inappropriately touched this strange man and forced my very obnoxiously bright hot pink neck pillow around his neck.

But it was too late to take the gesture back.

“I can’t sleep anyway so please take it.” Things felt mildly uncomfortable in the minutes that followed. He left the pillow on probably just out of kindness. I realized looking over how pink it really was. And how awkward it all was. After a few minutes he took it off saying, “Yeah, thanks anyway, but I can’t really sleep either.”

Then, since we were both very awake, we started to chat.

“Where are you heading?” he asked.

“Well, my dad is actually dying of cancer. So I’m going to see him before he dies.”

“Oh wow. I’m sorry to hear that.”

“Where are you going?” I asked.

“Actually, we just got done with basic training in the Marine Corp. Now we’re all going for job training.” I glanced around as I realized that the couple rows in front of us were filled with young men who had just gone through one of the most extreme trainings there is. I noticed for the first time his shaved head.

“Oh wow, really? My dad was a Marine too! He was in Vietnam.” I sat up and smiled, thinking about my dad at this age coming back from basic.IMG_2086

“Really? That’s cool.” He began to tell me all about basic training and the things he did. He seemed proud and weary. “Yeah.” And then he paused. “They really beat you down in there.”

That’s how he seemed to me in that moment and even from the moment I saw him.

“My girlfriend broke up with me while I was there. She wrote a letter telling me she wanted to break up.” There was a world of pain in his young tired eyes.

“Wow. It’s funny because the same thing happened to my dad. His girlfriend who he was really in love with broke up with him when he was in Vietnam. He was really devastated. She wrote a letter too…” I told him all about how dad has signed up for the Marine Corp right when he turned 18 – he didn’t wait to be drafted. How he worked on tanks and didn’t want to talk about what he saw over there. And then he told me about his family and how he felt like he had nothing else to really do back home. I felt like I kept repeating “Yeah, that sounds like my dad.”. And it did. Despite the fact that I never even got his name, somehow this complete stranger didn’t seem so unfamiliar. I saw in him qualities that reminded me so much of dad. That spirit of courage, that mind of defeat and a heart searching to love and be loved.

At one point I almost told him about my prayer for him, but those words never made their way out. But I’m not sure it really mattered that I didn’t tell him. God was there. He’s always there, always faithful.IMG_2101

Soon our conversation extended to the rest of his fellow Marines. The guy in front of me was very cute with an enormous smile and eyes that shone so bright. You’d never know he just went through the grueling, traumatizing training of the Marine Corps. He asked me all kinds of questions. I told him about dad and the kids and how they have autism. He gave me a huge smile and with a twinkle in his eyes said, “Hey that’s great! Having kids with autism is a blessing!!” I really wanted to reach over and hug him. But we high-fived instead.

We all walked off the plane together and I looked back to see them gathering in a group at the gate.

“Bye you guys! It was so great meeting you all. I hope things go great and take care. You guys are amazing! Truly.” They waved and smiled at me as I turned away and headed toward my next gate and the flight home.IMG_2112

When I finally landed in Ft. Myers, Florida, I called mom while waiting for my aunt to pick me up. I was so relieved to finally be there.

“Ok, I’m here! My flight just landed.”

“Sabra…your father passed away early this morning.”

My heart sank and tears flooded my eyes. I knew it. Somehow I just knew, but it didn’t make the pain less.

I didn’t make it home in time to see his body before they carried it away. And as much as it hurt, I knew that’s what he wanted. Who knows? Knowing him, he planned it that way. He sure was stubborn.

As it turned out, dad passed away when I was on that flight from LA to NC – when I was with those brave and tired young men. Those men who made a commitment of sacrifice to our great country. Those men whose names I’ll never know. Or maybe they were angels. Those strangers that for a moment in time were as close to me as anyone could be that morning when God lifted my dad to Heaven and for a moment in time, lifted me with him.

October 15, 2015 / paperkids

Amazing Grace : In memory of my father

It’s been three months since dad passed away. He died on his birthday, which seems like something he’d do.  I sometimes wonder if he died because he knew that I was coming to see him that day on the red eye from LAX. I just had to see him. The reality had hit me hard the day before – he’s really dying.  I hadn’t allowed myself to believe it and even now, I don’t want to. I booked a same day flight. But I didn’t make it in time. His body had already been taken.  I knew mom got him out of there quickly to fulfill some unspoken wish my dad had. I know that he would’ve wanted it that way. He didn’t want me to see him like that. To see all the tumors which covered his face. He didn’t want me to see how the cancer had withered his body to a shell of what it once was.  I stared at the empty hospital bed in the living room by the open window, light bathing it through the window. Nothing felt the same in the house without him in it. The whole world seemed different. Just like that. He was gone.

I wanted to share the following story with him before he died, but I didn’t. I know he knew how I felt and we didn’t need words between us. I wrote most of it a couple years ago as part of a book that still lies dormant in my computer, hiding in memories.  Sometimes the memories that stay with us aren’t the big life events, but the small moments that brush over us in an evening walk.  They seem to become part of an eternal tapestry that never fades, woven by love itself.

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Amazing Grace : In memory of my father, John States (July 29, 1949 – July 29, 2015) 

 

Time had not blemished the little white church nor it’s white wooden steeple which reached up to the heavens above the tangle of dangling gray moss. Dad and I opened the creaky doors of his pickup truck and made our way to the pastor’s office. The oaks swayed gracefully and no sound was heard but the wind rippling through the leaves. Surrounded by orange groves and winding shell roads, this place hadn’t seen all that much change since it’s founding in the 1800’s. I remember sitting in those wooden pews, red leather bound hymnal in hand, belting out The little white church in the vale with the congregation while the organist hunched over the keys. There were so many memories here – some of loss and some of joy and my mind is swept with images.
Dad chewed on his gum nervously, a twitch in his hand and glaze in his tired eyes. He smelled like he’d double doused with the Old Spice. In a week, he would finally get to walk his little girl down the aisle, ten years too late. How many times had I heard him pout “I never got to walk my daughter down the aisle like every other father.”?
“Yeah, I know, dad. Well, maybe at the ten year” I would reply in the nonchalant, tough it up attitude that he’d always used with me.

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And now here we were, ten years after I stood in a small chapel in Las Vegas with only my friend Christine present, and took Jared Murphy as my husband. And my, how things had changed since then. That little twenty minute wedding suited us at the time. We fit it into our work schedules with the same organization as a trip to the dentist, setting out a date when Jared had a day off work. I barely knew that couple in Vegas and they certainly never knew all that lay before them. But our little ceremony at the Little Church of the West was everything a true union should have been. It was intimate and sacred and as I held the plastic roses bought last minute at a gas station, there was nothing artificial about it at all.
We sat and listened to the new pastor, who was uncharacteristically charismatic for our small country chapel. We started discussing the details of what we would do and how we would stand and what would be said. Dad had his weathered, callused hands crossed politely on his chest, legs fidgeting, and there was a whisper of a smile as he hung on every word the pastor said. Yes, he was taking this serious like a first-time father of the bride! I couldn’t stop looking at him and smiling. I thought he might be dying for a cigarette by now, but he looked very … well, excited. It made me wish I would’ve given him this all those years ago. He’d always been much more sentimental than mom and I’d always loved that about him.IMG_2113IMG_2112
“I was thinking about walking down the aisle to Amazing Grace.” I interjected.
Why was I feeling nervous? I had found an instrumental version on the internet and I thought the pianist could play it since mom had offered to pay for music. Live music was already a step up from my first ceremony, where we came down to the recorded wedding march. The pastor gave me a strange look. And so did dad for that matter. Why was everyone giving me a hard time about this song?
Dad scratched his clean shaven face. “Sabra, you gotta go down to that Dum, dum da dum..” he was motioning his hard hands like a conductor and humming the wedding march. Of course, that’s what he wanted. Little did I know the seriousness to which dad would take this whole thing.
“Okay, dad! Yeah, that’s probably better. I just really like that song. But, let’s go traditional”. In that moment I realized that this whole ceremony meant more to me than just renewing my vows to Jared. Deep down I knew that maybe it wasn’t really for Jared at all. It was about all of us really – mom and dad and Jared, and our children and how thankful I was that they were going to be there. We only had one month in the summer now to be together since we lived on opposite sides of the country. Time together with mom and dad had become so very precious  to me and I held on to these moments as if any minute, they could all disappear. Every moment with them filled my heart with joy.IMG_2107
It truly felt like amazing grace.
Dad wanted to walk his daughter down the aisle to the traditional wedding march and how could I argue? He started to get teary eyed while the pastor was talking and suddenly I didn’t care what I wanted anymore. I only knew that the moment stood still in time, his hand on mine.
We left the air-conditioned office and walked back out to the car so dad could finally light up a cigarette. The midday had become stagnant and humid and now the sounds of birds and insects filled the air. Being together with him like this reminded me of the time I worked with him as a teenager drilling water wells and doing pump work. He was one of the best. He wasn’t afraid to get me out there in a hard hat laying pipe and digging mud holes and I lost a shoe or two to those pits.  I remember watching him in total awe run a whole rig solo. He seemed to have a genius ability to understand all the figures and how deep to go to hit water. I loved seeing him work out there twisting huge steel pipes together as the drill rods clanged together and the gray mud covered everything. Finishing a job was euphoric, but I mostly marveled at how he could do it alone. “I had a good helper,” he’d say but it really wasn’t true. Being and working alone had always been his element. We would sit in the back of his pickup and eat bologna and mustard sandwiches.IMG_2086
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Dad was a hard-working man and also a man of hard memories. Things that I never understood and couldn’t possibly relate to, but longed to. Memories of a difficult childhood that I’ll never truly comprehend. Memories of being in Vietnam that he never talked about. When others were being drafted, he signed up at the age of eighteen for the Marine Corps and even went in for a second tour in Vietnam. I think he thought he’d die there and it might have even been his intention at the time. But his mother already had another son there so she wrote a letter and they brought him home. They wanted to make him a drill sergeant but he turned it down. All mysteries. IMG_0652
Despite what dad had gone through – or maybe because of it – he always had a passionate love for his family. He and mom met on a blind date and she says it was love at first sight.  All he wanted was a family of his own to love. My memories are filled with trips down the river, jumping into the creek, vacations in the mountains, fishing, hunting, the beach, exploring the woods with machetes and all kinds of things that I’d imagine other dads might be scared to let their kids do. He never spoke to me like a child. He wasn’t afraid of anything. When I started having migraines at eight, he’d put his hands on my head and try to take the pain on himself.  He was always a care taker like that. He was always taking care of baby animals that he found and caring for his friends and family who were dying.  I always wished he’d take care of himself like that. He was stubborn, but sensitive. When I cried, he cried. As hard as dad and I fought at times – and no one could fire me up like dad – we always made up and often in tears. And we always made up.IMG_3458 IMG_2090 IMG_2101

My dad was stubbornly private about many things, but I always felt like I understood him. I somehow felt his pain and maybe because I’m so much like him. I felt it in our silence although I would never think to mention it. I couldn’t talk to him about that sort of thing. I just have always gotten him. And I always wanted to make it better… make him happy.  But years bring seasons and we had our share. As much as I felt that I understood my dad,  I could never fully understand his grief. Is anything harder than losing a child? An only son? When I had Emma and Hayden, I realized what that pain must have been like. But dad was such a rock during that time after we lost Tim in a dirt bike accident at the age of only thirteen.

Less than a year before my brother died, something had begun to change in dad. It was more than just the fear of losing his family. It was more than just his meetings at AA. It was much more than his sudden joining of this church.  It was a life transformed by God. It was such a quiet conversion that I might never have known except that he couldn’t hide how different he was. Those months leading up to my brother’s death were blissful for our family as a healing had taken place.  I knew that he felt happy and loved at last and somehow that love was enough. I no longer felt his pain because it wasn’t’ there anymore.  It was by the grace of God that dad was so strong for us in the years that followed Tim’s death. Despite his agonizing grief, I remember him driving the church bus and coaching little league and even preaching before the congregation here. I never in my wildest imagination would’ve envisioned seeing my dad behind a pulpit or even reading the Bible. But that’s the thing about God – he often goes above and beyond what you could ever hope or imagine. This, the hardest time in his life, was the only time in my life that I didn’t worry about my dad. There was a peace on him which I still remember, as if his broken pieces had all been put back together and he was whole for the first time – his truest self; my dad. Despite everything else that has happened before or after, this is how I’ll always think of him.DSC_4439
We sat in the truck and he started the engine. The windows were down and sweat was already streaming down my temples. But it all felt so good and comfortable and we started out, a breeze whipping in through the open windows, the smell of cigarettes and coffee in the cab. He made a painfully slow turn out onto the road. In that moment, I knew that we were thinking the same thing. I knew that as we pulled out of the driveway, we were leaving something behind. The truck had pulled out to the right where it would wind through the orange grove and pastures and towering oaks. This road would take us home, but somewhere in the silence of our hearts we veered to the left, where the pasture land was wider. The sun seems to shine brighter down that way where there are fewer trees hovering and the weathered wooden houses springing up here and there had settled the land in such a way as they almost looked like part of the earth. We would then turn left onto the highway and soon pull onto a grassy road to the left off the freeway. We would open a metal gate and pull in. There, fenced off in the middle of a pasture grazed by lowing cattle, majestic oak trees would shade a manicured lawn strewn with headstones and fallen leaves. Some would be new, stark white granite embraced with fresh flowers. But most would be old stone monoliths or small flat plates darkened with age which had been here since the 1700’s. There in the far corner a small plot would be framed off by granite; a plot large enough for four or five headstones. A small granite bench and small ceramic lamb rests in one corner. There in that plot Tim’s body lies and has since I was fifteen years old. As we pull toward home, the silence is loud with a longing to turn the truck around and go there and fling ourselves upon that grave in the middle of that pasture and weep. But we don’t. Our thoughts had enveloped it and that is enough. Maybe another day. In that moment, he was nowhere more on this earth than inside that silence.
Dad and I laugh as we pull up the long grassy driveway. I poke fun at his painfully slow driving and he says, “Shut up, Sabra”.  Soon he would be walking me down the aisle for the first time and something about that makes me feel like a blushing bride for the first time. I can see Emma’s face pressed into the screen of the front porch and hear Hayden’s loud squeal as he runs. They are stripped to their underwear in the tremendous heat and humidity. Storm clouds have started to gather overhead and a breeze has aroused the sweltering midday with the promise of rain.

 

I made a slideshow of some photos that mean the world to me. So thankful that our friend Tonya, captured some wonderful photos of our ceremony. They are beyond special to me. In loving memory of my dad, who will forever remain in my heart.

 

May 10, 2015 / paperkids

A picture of love

11251632_10153040350128001_8723909292923101282_nI got the sweetest Mother’s Day picture from my son in his backpack. The teachers in the autism program are semi-professional in their ability to get a great pic. And for kids with autism, smiles and eye contact don’t come easy. Throw in him holding a flower and it’s near perfection. Ahhhh. And of course, it got a gajillion likes on Facebook well, because it was just that cute.

But you know, the only thing that I could think of was my mom. Not only would she love it, because she adores the kids in every way, but Hayden looked so much like my brother in this photo. His smile, his hair, his arm, his hand .. that hand!!!! Oh, how I remember it. It’s almost like looking at a photo of my brother at the age of nine.  Not necesscarily identical, but there’s just something – similarities you’d see if you knew my brother well. I couldn’t wait for her to see it and  I knew that she’d see it too. All the little details of his form, but more than anything just his happiness. Always shining, always so alive.

Image-1When we got on the phone later, the first thing she said about thee picture was “He looks so much like Tim!”.
Me: “I know!!! Did you see his hand? It looks just like Tim’s.”
Mom: “And it’s in his hair and in his eyes. That’s what I really noticed. Something in his eyes. It makes me wonder how he’ll look as he grows. Tim was thirteen when he died, so it really makes me wonder how Hayden will grow and look when he’s older.”
Me: “I know, me too. They have such a similar body frame. He’s petite like me and Tim…”

Our conversation went on for a while across the 3,000 + miles of distance that’s been between us for too long. You’d think it would’ve been a somber conversation somehow at the mention of my brother, but it was full of joy and life.
Much like my mom herself. She’s a woman who loves deeply, despite how deeply she has lost. I don’t think anyone ever truly moves on from the death of a child, and I know that my mom and dad never will. Tim will always be with us, the memories of his exuberant smile and infectious laugh imbedded in our hearts. Yet through the devastation of losing Tim, mom and dad love harder and fuller than anyone I’ve ever known.

My mom. The most loving, giving, strong, forgiving, peaceful, joyful, faithful and wise person I’ve ever known. Her faith has been so steadfast and has inspired me no matter where I’ve been in my journey. She is the embodiment of one of her favorite verses, “Cling to that which is good.”

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A photo that Renee captured moments after Emma’s birth.

When I think of her, sometimes I reflect on the birth of Emma – a surreal moment that meant more to me than I can put into words. Its amazing how much you can love someone that you just met. She was new life. New life was in our family after all those years of not having Tim!  And I longed to share that joy with my parents. Not that my children would ever replace Tim, but that they could love a child again. My parent’s love is so big, that it just needs to be shared.

Things came full circle somehow that day. Jared had, in a very short time, gone from being a complete stranger to a new son to my parents. I remember that day mom stood up in their tiny country church back in Florida – the same church where we held the funeral for Tim – and in tears introduced Jared saying, “I have a son, again.” Jared seemed quite uncomfortable, all eyes on him, mom’s tears welling up (she doesn’t cry often). But later, he would say that that was the moment he first believed in God. We would renew our wedding vows in a very small ceremony in that same church for our ten year anniversary. Those struggles our family experienced when I was young somehow only strengthened the ferocious love and devotion my parents had and they really understood the gift of life and how precious it is. Now I could share their love with my husband and children.DSC_4462

I always say, and it’s true, that I’d love to be half the mom that my mom is. Not because she cleaned my room (a lot) or listened to my hours of whining on the telephone or rubbed my back with her soft hand, or put up with my being out all hours of the night on breaks from college, or survived the many car accidents I got into that nearly gave her a nervous breakdown. It isn’t that she’s been like a second mom to my kids ever since they were born, or that she has more patience and is more laid back than anyone ever. It isn’t any particular thing that made my mom the person that I’ve always wanted to be. It was just her love.

That love has inspired me in every way. Its woven itself into the fabric of my life and given its tapestry such a beauty and brightness. Its truly the perfect picture of God’s love : It’s a love that is patient and kind. It doesn’t envy or boast. It’s not rude or self-seeking. It has never kept a record of my wrongs, it doesn’t delight in evil, but rejoices with the truth.. it has always protected, always trusted, always hoped, always persevered….

That love has never failed. And I know it never will.
I’m the worst at sending cards, something I got honestly from mom, who could care less about any card or gift. We have both been guilty of forgetting each other’s birthdays and have never made a big to-do about holidays in general. I don’t even think our card (that Jared bought and I signed) will get there on time. But today my mind just wandered to her and how much I miss and still need her even at almost forty years old. So here I am writing. Because it’s something that I can do to express how unbelievably blessed I feel to have her as not only my mother, but my friend.IMG_5317

Mom, words may fall short, but you never have. God is so good. He knew that I would need a mother to be strong and encourage me in my hardest struggles and to pray for me in my darkest hours. There certainly have been many twists and turns in my life, yet it’s been full of grace. All through it, you have been a light, shining the love of Christ to all around you. You have shown me what real faith, hope and love look like as you follow Him, leaving lasting impressions along that narrow path that leads to glory.

I love you forever.

Sabra

This song always makes me think of mom because she loves it and we joke how this will be her funeral song. LOL.  It may sound morbid, but there is no fear in love.  It’s a love song to God that we can both share as we live out His love in thanks and praise.

March 6, 2015 / paperkids

Heaven sings

On any given day, a parade of thoughts march through my mind and never are they so thick as when I contemplate Emma.

Oh, how I wonder about her!

Will we ever be able to get a handle on the OCD’s and impulsivity that overtake her body? …. Does she feel lonely? … Will she be able to bathe and dress herself someday? …  Will she ever type with anyone else but me, and if something happens to me, would she ever communicate again? …. How will I manage or help her if she starts raging again? …   What kind of life will she really have and will it be full and rewarding? … Will she make meaningful relationships when she grows older? …. What if something happens to us – who will care for our children? ……

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My mind drifts on and I capture these thoughts throughout the day and pray. What more could I do?

Sometimes I realize a whole day has gone by and I haven’t typed with her.  I look at her fluttering around the room, or watch her hit herself in the head when Hayden squeals, or see her stare off into the sky as she sits in her favorite spot in the back yard.

And I wonder about all these things.

I sat down to type with her the other day, realizing that it had been at least a day since we really had a good chat.  I thought maybe she’d comment on the day.  She reached eagerly down to the keyboard, my hand resting lightly around her elbow.

Emma: Jesus spoke to me in my treasured dream last night.

Me: “He did?!!  What did he say?”

Emma: He said not to fear because he rests triumphant. He rests in trials.  Trust that I will make the life that rests in me grow so free that they will never fear.

This was the second time Emma told me that she dreamed of Jesus. I don’t always share these things, but it’s too powerful and beautiful not to. So I asked her if I could share it all and she typed “of course”.

Even as I write this, my heart swells and my tears fall.  He is so much bigger than all my hopes and fears.

Here is a recent poem that Emma typed – the first in a while.  She typed it so quickly as if the words just flowed out of her.  I shared it with my family and my friend Gloria, who sent back this beautiful photo below and I had to use it. At the time and even now, I can’t help but think that her poem was for me in a moment of fear and sadness – another intimate reminder from him :  Rest in me. I have overcome the world.

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Heaven sings

Treasures in heaven sing
yearning to teach three things:
Truth here rests in God alone,
healing exists in prayer,
and finding rest itself is
the essence of hope that He
will bring to those that
come to Him.
The kingdom of God is
pouring down everything.
Treasure the teaching.

– Emma Murphy

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January 6, 2015 / paperkids

Yearning to rest

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Last night was the first full night of sleep so far in 2015.  The kids for many reasons – being out of school and off schedule, medication issues, OCDs, the weather changes, sickness, ect..- have taken turns waking up and once we’re up, even if it’s 2 am, we are pretty much up.  And even when the kids are sound asleep, I’ve acquired this kind of super-sonic hearing that I could swear makes it possible for me to even hear the neighbor’s tv or other strange phantom sounds.  On restless nights, I’ll fidget my legs and even though I might lay perfectly still, my mind is spinning like a hamster wheel.

“I can feel your squirrel beams!”  Jared will say, breaking the silence before slipping back into a dense, bed rattling snore.

On nights like these, I end up popping a melatonin and drowning out the squirrel beams and snoring in a cloud of repetitive prayers.

Squirrel beams.  That’s what Jared calls it, but some might call it by it’s more appropriate term: anxiety.

It would be understandable I guess.  This year has certainly been filled with highs and lows.  We’ve been blessed that this is the first time in … well, maybe forever, that we haven’t been worried about money, which is a reprieve considering there’s so many others things to stress about.  Jared has a great job with a great commute – just right up the stairs and to the left!  Hayden had a good year and his language is progressing. His interaction is better and his smile just brightens the whole room. He turned 9 this year and finally got the Scooter’s Jungle party of his dreams!IMG_6121

Emma turned 13 (WOW) and is now taller than me and we are sharing jeans, which is pretty useful I must admit.  Even so, we did hit some extreme lows with how hard Emma’s aggression became.  This is an extremely tough age for kids  anyway, but add autism into the mix with a flood of hormones surging through a dis-regulated body and we had hit a crisis point several times throughout the year.  For most of the year, we could not get control of her rages, trying different medications, that didn’t seem to have any effect.  I didn’t write about it much because… well, when your’e in it, your’e in it.  You just handle it and pray… a lot!  Watching the child you love more than anything spin into such aggression, attacking you, hitting herself in the head and biting and pinching herself with no ability to stop it in any way, is excruciating.  I know that there are many families who are dealing with these exact issues, and my only hope is that there will be better treatment plan options for adolescents and young adults in the future to really give them safe, appropriate treatment when crisis occurs. I will be elaborating more on this topic because it deserves a post of it’s own. Fortunately, we were blessed a little over a month ago to find a medication which stopped the rages!! I still can’t believe it!  I keep waiting for them, but they never come.  A true miracle!!!!  And she has almost completely stopped hitting and biting herself!  Answered prayer.  It had been so long and it had gotten so serious, that I didn’t know what we were going to do.  This has been life changing for us all.IMG_4964

Yet in the midst of all these crazy behaviors that seemed to overtake Emma’s life for the last several years, there she is. Just Emma. She isn’t a set of behaviors, she isn’t autism, she isn’t what you perceive with your eyes altogether when you see her mouthing the plastic camera she carries closely with her these days. When I look at Emma, I think about her faith and the words that she types so painstakingly.  In her darkest times, she is so at peace with God.  I reflect on a dream that she shared with me back in September that perhaps one day I’ll share in its entirety.  In this dream, Jesus spoke to her and said:

“Truly I say to you that I will take very great rest in restoring you.”

She’s okay.  She’s really okay, isn’t she?  When I think about my prayers for Emma, I think about how praying so fervently for her has ignited such a deeper intimacy with God than what I’ve experienced in so long and maybe ever.  I didn’t even really see it coming, but BAM.  He lit me up and renewed me again, creating something truly beautiful in my life through such tremendous pain and despair.  Surrendering all I had to him when I had nothing left to hold onto changed my life for the better and I wouldn’t change that for anything in this world.

Stepping into this new year, it does cause me to reflect on all these things and how each day is made new.  Our life is hard and I’ve often thought it just seems to get harder. The responsibility I feel for the past, present and future wellness on every level for my two children with autism threatens to overwhelm me on every side.  It’s a constant battle, testing everything I have inside and out.  But here HE is, saying “Come to me, all who are weary and burdened, and I will give you rest.”  The strength, the beauty and the grace of God completely overshadows all the dark times, infusing me and enabling me to love deeper and live more bold than I ever imagined I could.

I wanted to share Emma’s entry for the school’s Reflections Art program this past year.  She didn’t win and we couldn’t even sit through the gala or get a photo of her by her poem because her body just wouldn’t allow for it, but it is truly a blessing that she can participate with her peers. For those who may not know, just four years ago at the age of nine, Emma, who has been nonverbal since she was two years old,  typed words on a keyboard for the first time, my hand lightly supporting hers.  We got to really know our daughter for the first time and quickly discovered her beautiful spirit and the love she has for God and I’m still blown away by her heart and her depth. The theme for Reflections this year was “The world would be a better place if….”.  I know there is a lot in this world that could use improvement.  In fact, there seems to be no shortage of murder, warfare, pollution, sickness and devastating stories on the news to remind us daily that this world in which we live could definitely be a better place.  I had wondered what angle Emma would take with this theme and wasn’t’ surprised that she didn’t write about any of these and not even autism.  She just wrote from her heart.

 

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August 1, 2014 / paperkids

It takes a village

My heart sank. I knew it, I thought, cursing myself inside.  Of course. I  knew that elementary school graduations were a big deal. I’d seen the pictures of other kids dressed up and had heard it mentioned many times that it was a big deal. So as I approached the ceremony and looked at the graduating sixth graders all decked out in dresses and dress pants and heals – and then I reflected that Emma was among them in worn sneakers and jeans  – panic rose up in my throat.  What had I done!??
I saw her younger classmates from the autism program in the audience and the smiles and glances of the many aides. There was a reassurance in their eyes, and I could hardly understand why. WHY?!!.
Why didn’t I get this right?! I looked out in the sea of unfamiliar, well-dressed parents, cameras in hand. OH no!!! The camera! And I didn’t even have my phone! I could feel the sinking feeling seeping down further into a dark pit. My eyes began to feel heavy and I pulled my sunglasses down. I wanted to cry and the ceremony hadn’t even started.  Why didn’t I bother to take this seriously?  I should have known. I should have been on it like all these other parents! Why were they so together?  I think I remembered an email about it. My mind was racing, my eyes were scanning for Emma in the group of eager, fidgety sixth graders up front. I saw Kellie, the wonderful aide who hangs with Emma much throughout the day, but I couldn’t see Emma, who I was sure was beside her.
I was never going to forgive myself for this – it would be one of the many things that I’d reflect on in anguish for years to come. The worst part about it wasn’t that Emma would look bad in her casual clothes or that I wouldn’t get a great picture of her. The worst part, was that she would stand out once again and possibly suffer more embarrassment. Here she was in a group of her peers at school – with the whole of the gen ed graduating sixth graders – and she would stick out among a group that she’d love nothing more than to fit in with. She was probably thinking that her mom really dropped the ball on this one and would’ve loved to tell me so before she left for school that morning, but she couldn’t. I would have to apologize profusely later and hope that I wouldn’t hear too much despair in her words as she typed them out.  She’s been through much worse, but still…
And then I saw her.
I suppose there were a lot of parents who cried that day, but maybe none more so than me. And it certainly wasn’t because I felt this to be some treasured milestone in the life of my daughter.  It was because when I saw her, she looked beautiful! She had a long, velvety black dress that fit her thin frame perfectly. She had an elegantly draped cropped white sweater and headband that suited her perfectly with her hair done up. She even had sandals on that blended in with the ensemble. I was completely overwhelmed with relief and gratitude and a tender feeling that just kind of swept over me.
Someone was there for her when I wasn’t. Someone took care of her when I didn’t.

I didn’t have the urge to feel the shame of my parental inadequacies. I didn’t care in that moment to beat myself up for what I did or didn’t do. I simply felt my current state of panic dissolve and the only feeling that remained was the warm fuzzy feeling like someone had wrapped me in a soft cozy blanket and picked me up.
You see, I sometimes really do believe that I’m doing it alone. I think that I am the one. The only one who is ever going to make any difference in my children’s lives. “If I don’t, who will?” I can’t tell you how many times I’ve said this. Even as I write this, I still hear that voice and I believe it to be true. But is it? That morning as I watched Emma keep her body calm enough to approach the stage in front of her peers, I realized that it isn’t true at all. I realized that for their whole lives, there will be others. There always have been and there always will be. I just have to cling to that hope and remember to trust and rest. God has and will continue to care for them because they are his; and I truly believe that he will always bring people into their lives who will help to do what I cannot.
I cried all over the teachers and couldn’t stop thanking them and so great was my joy and the love I felt in my heart, that I didn’t have any room left to feel like a horrible parent. And they cried, too. They are going to miss her so much. It turns out they happened to have the dress to give Emma anyway and the shoes belonged to one of the aides. And someone was there with a camera, too!  I tried to explain what it meant to me, but words fell short.
How could I explain that for a moment, I saw a bigger picture of my child’s life and the future seemed to be full of people who cared for her, and it overflowed with the goodness of God.

Thanks from the bottom of my heart to everyone who has been there in big and small ways for us all – my parents who are second parents to my kids and all our family who is always there  for us, my amazing friends, tireless teachers, church buddies who always seek to fill a need …bus drivers who are incredibly nice and even help work on speech.. Michelle – wherever she is, the most amazing flight attendant who literally saved us last summer when we endured one insane five hour flight (you deserve your own post and I’m convinced that you might actually be an angel), and even all you perfect strangers who have gone out of your way to help us or just brighten our day with a word or smile.  You are treasured more than you’ll ever know.

None of us do it alone.

IMG_5395

March 24, 2014 / paperkids

Rarities

1150799_10152130814593001_1531513678_nMost of the time I let what I write inspire the photo I choose for a blog post, but when my amazing friend and photog Renee Bowen snapped a pic of us  the other night (on her iPhone!!)  it was one of those rare moments that I thought,

Wow.  That’s so … so us!

So this photo has inspired me to talk about this man, Jared Murphy.

Yes, he’s cute.. handsome, with piercing blue eyes….

He’s a pretty formidable writer and artist. He’s intellectual and a little quirky (see neurotic).. he’s funny!…And if we weren’t together, I could see him still living alone in a dark apartment somewhere doing his inky artwork… or maybe traveling.  I love his style even when he wears his shirts on backwards, inside out and he has been known to pull his socks up really high and wear them with thongs.  Ever since I’ve known him he’s written little notes to himself on his hands and on tiny pieces of paper that I find all over the place.  And buried deep in the garage somewhere is a huge cardboard box with hundreds of small scraps of paper with ideas written on them that I lovingly call the “box of ideas”.  I would have shared one as an example, but they are top-secret soo….

But what I really want to talk about is something that I think this photo really captures – his heart.

A few weeks ago, after a great date where we weren’t actually ripping each other’s heads off or stressing about the kids or how much we’d spent on happy hour food, we pulled into the garage and I looked at him peacefully and said.

“You know, you are my best friend and I honestly can’t even imagine my life without you.”

Wow. When did I get so sweet? Why this softening of my heart? I didn’t have time to ponder my inner dialogue because of the look on his face. I think he had melted a little.

“Thanks babe” he said with eyes squinting and such a huge grin that I knew immediately that I had good thing here.

“Well, I really mean it. Maybe I don’t tell you often enough…”

No, I really didn’t. I mean, I don’t.   I feel like I don’t do nearly enough or tell him often enough how thankful I am for him.   I didn’t even get him a Christmas present this year and I know how much he loves them.  Even just my few words had fallen on him like rain in the desert.

When I think of the longgggg grocery list of things that Jared does and how thankful I am that I can rely on him. How thankful I am that I can tell him anything. How thankful I am that I can laugh with him!!

And how completely thankful that I can cry on him and/or just be generally crazy.

And I can pray with him.  And sometimes if I’m too down to pray, he’ll pray for me.

And as an incredible father of two children with autism who need lots of extra love and support, I could ask for no better partner.  No, I don’t do nearly enough for this man who is my biggest fan in every way.

On our ten-year anniversary back in 2010, he wrote this poem and read it to me on my parent’s living room floor in ninety percent humidity with no A.C.

And even though it might not be the perfect poem (according to Jared), just like the photo, it’s perfectly us.

Rarities

When we drove up here from the airport

Lynn and I saw a double rainbow

and it made me a little sad for it,

since a rainbow is hardly ever seen –

especially a double rainbow.

But as we moved on from there

and drew closer to Sabra and the kids,

I no longer worried for it –

wasn’t as scared for it,

since I had Sabra.

And once I had Sabra in my field of vision

I knew right there; was reminded again,

that rainbows aren’t so rare.

This week I was jogging and I happened upon a sandcastle.

It was pristine and there was no one else around,

its bulwarks were squared off, perfect as ice-cube trays,

its spires were chiseled like obelisks –

still I worried about it out there unprotected

for anyone to trample; it’s being destined for the gulf to topple,

and i was jealous too of its possible inhabitants.

Well in a few minutes I walked through the door

and there was Sabra,

and the peril and the splendor and the symmetry of fortresses

took also the shape of love and became ineradicable.

I was in the living room turning the final page

of a particularly bleak and heart-rending novel,

and all the forms and shapes of folly

and evil and care-blind elements and destitution

were included there; all ravaging the glimmer of their hopes –

a downpour of it on their every breath.

And when I shut that book I was nearly in tears,

but I looked up from it and there was Sabra

dancing with the kids, all of them twirling around the room –

and I realized that I didn’t really know

any sad stories.

– Jared Murphy

August 10, 2013 / paperkids

Our summer in a LOT of undeleted photos!

IMG_9267It had been two long years since we felt the hot, moist Florida air on our faces and it’s as if it knew somehow, because it was extra muggy and buggy this year in the Sunshine State!  I have some tales from the country that might make your skin crawl.. but then there were the stunning assortment of  butterflies!! .. and the sounds and the feel of dew on my feet.  There was also the sight of my dad, who I hadn’t seen in two years, still recovering from cancer, chemo and radiation.  There are so many things I’d love to write about – enjoying family, luke warm gulf water, fresh air, big hair, Wits and Wagers with my cousins, Gunsmoke episodes, autism in all its glory and mystery (and sometimes misery), mosquitoes (that deserves a post of its own), spiders (that too), and the never-ending parade of home-cooked goodness that mom conjures with ease.  Yes, there is plenty to write about if only I could find the time!

IMG_0308But pictures and music… that’s something I can manage.

And speaking of pictures…

This slideshow was inspired by the fact that I NEVER seem to delete photos .. like ever!  Yeah, I’m basically a photo hoarder.   It was hard to let any go, so I thought I’d go with it!

I’ll always be a Florida girl at heart:)

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