In Jello

(photo from 6/9/2013)

Reflecting on last year it seemed we were frozen in time while Mike's life became overrun by medical urgency. Starting in January, he had a major brain procedure every 3 months. Surgery, then a bigger surgery, then radiation for a month. He claims the radiation was the worst. How could you possible choose a worst of three horribles? It would be like insisting a head on collision would be worse in one brand of car over another. It's three versions of bad! We'll just have to take his word for it.........I guess.

I can't speak for him on how the whole thing shakes out with hindsight. For me, I can best explain it this way: It was like we were stuck inside a mountain of jello. The world around us kept moving and we could see it clearly, but were not part of it. We were separate from it, suspended in another dimension where things moved more slowly. If at all. The outside world was nothing I could relate to. The constant press of concern and worry about my husband's brain expanded into every space available within my head. Conversations left me feeling bored, confused, frustrated, or downright mad that another topic would dare try to enter. That space was already burning and full of dread.

Who cares if your garden isn't growing. His head was cut open!

Don't they see we're suspended in jello?!

No. People don't see it. They don't know. Unless they've been stuck in it, too.

***

Back in my working days there was a woman who worked on my floor who never smiled. People in the building had a nickname for her, but I won't repeat it because this is a family site. Let's just say it rhymed with stitch. Any smile or hello was rudely ignored.

When I was stuck in jello, I was a total stitch. I couldn't find my friendly. I lost my social skills for a while. I couldn't fake it. And I now understand that sometimes when people can't smile back, they might be in the middle of something really heavy. They just might need some space and understanding. Or a plate of cookies left on their desk with a nice note. I wish I did that for the work stitch. Lots of people did that for us and it was the only thing that felt good: food. Words didn't matter so much.

I'm not in the jello anymore and it's refreshing to be part of both complex and mundane conversations. Regular life with uncomplicated words and the absence of constant fear. I hope I don't forget when I see someone else in jello. Instead of being offended, I hope I remember to feed them.

dentist

I've been visiting a dentist quite regularly most of my life. I would guess at least twice a year, which makes it about 72 times.  I will be the first to admit I am not a dental hygienist. However, I am pretty familiar with the procedures that typically occur (and in which order) when getting my teeth cleaned.

This week I went to our local dentist late in the afternoon. She had another 'dentist' filling in for her. Also an assistant I never saw before. I would put money on it that they were either robbing the joint and trying to cover as workers or the doctor asked her neighbors last minute to fill in for her that day.

These two random ladies had no idea what they were doing.

The suction tube kept falling apart and was about 4 sized too big for my mouth.

Um, I think this is the Dyson vacuum cleaner tube, why don't you try for this little one by the tray of mini stabber tools?

That lady was all thumbs and would have been better off loading the get-a-way vehicle with machines and office furniture. It's not often I am embarrassed for other people, but for her I was blushing. Hey, I get it we all have out weaknesses, but sucking water from a widely opened mouth with a straw that's 4 inches thick? It's not putting a camel through the eye of a needle, my friend.

The "dentist" did the same type of internal tooth exam my daughter does (she's 4 btw) when she plays doctor and wants to see if my throat is red. Next came the gritty fluoride without water, mind you. Because who doesn't love frothy sand collecting in your mouth the taste of fruit punch and rock salt? I was dry heaving and gargling somehow at the same time. I started pointing to the water tube and sat up to take control of the situation my DAMN self when the useless suction tube lady clumsily dropped the tool.

Finally I was flossed. Last step in the process: floss. Now call me crazy, but the 71 other times I have been to the dentist never have I gurgled grit nor had it flossed between my teeth at the end of the cleaning. For a moment I wondered if I had just wandered into a dental school where they practice on you the way they do for hair stylist schools. Maybe I would only be charged a nominal fee because (chances are high) it was done wrong.

The good news is I felt less horrible about my dragon breath from my Indian food lunch. Come to think of it, maybe that threw them both off and caused distraction......

titleless

Dear Dad,

I think about you every day. Sometimes it makes me smile to think of something funny you said. When I called you at the hospital you had no idea who was calling your room, but you still answered the phone, "Tony's Pizzeria!" I laughed so hard I almost forgot you had terminal cancer.

I love speaking to your mother. She has a cheerfulness about her that even the sadness and loneliness your death left behind cannot destroy. Sylvia has this gift as well. She misses you dearly. She said you were the energy of the house and enjoyed your daily talks with her. Do you hear her when she tells me these things?

Sometimes it makes me sad to think of you. Your breath was so labored and your mind began to operate differently. I wonder where you are now. I wish I could see where you are. I wish I knew more definitively what's next once we leave earth. Mike eases my concern for you when he reminds me you are no longer in pain- I believe that for sure.

There is a veil of knowledge and understanding between us now that would probably be too complex for the living to comprehend. It would also not allow us the agency to decide and learn the way we ought to. Your death has caused me to reflect on this often and remember how little the material things of life matter. And how silly all of us must look spending our time and money and dumb things.

I review what I believe about death and the next life constantly in my mind and try to visualize it, but pictures come up empty. While my faith is present, my understanding could be sharpened. I suppose this should inspire me to dig around in my scriptures more.

Some say angels are on earth with us, are you one of them? If so, when are you near? Is it only when I think of you? Is it when I forget you? Is it when I talk about you to another?  Are you with your dad? I wonder what it was like for you to be near him again. Will you be the first one I see when I go?

If you are here and can see us, do you see the good moments and bad? Do you see when I cry? When someone is cruel to me? Did you see that magical that little 5 year old moment of childhood when my dear boy saw his carved pumpkin light up in the dark? It was a moment that gave me the biggest smile of the day, were you there? I was wishing then you could see it with me.

I miss you being there. I wish I had not taken it for granted.

Cycle of Life

On the cover of The Chicago Sun-Times today I can find headlines about the Chicago Marathon, Macy's Thanksgiving Day parade changing, Malala, Gun rights, The Cubs, GOP and Dems. It's in the Obits section I scan the towns to look for my father's name. Steven. I never knew if his official spelling was Stephen or Steven. Now I know.

None of the news for today really seems to matter. He doesn't get to read it. He is gone.

Someone who created me is gone, now. Despite not knowing him well, it still hurts. Staring in the face of the cycle of life feels pretty heavy at times.

I feel sad for the way the end of his life happened with poor health, cancer, and pain. I feel sad for what I never had with him - a strong relationship- and the hope of trying to catch up on any small portion of lost time coming to a close.

During the sacrament hymn at church today Mike grasped my hand and pointed to the words we were singing with the congregation:
Lord, we come before thee now; At thy feet we humbly bow.
Do not thou our suit disdain; Shall we seek thee, Lord, in vain?

Send some message from thy word; That may joy and peace afford.
Comfort those who weep and mourn; Let the time of love return.

Grant we all may seek and find; Thee, our gracious God, and kind.
Heal the sick; the captive free. Let us all rejoice in thee.

"Lord, We Come Before Thee Now"
by William Hammond, 1719-1783

*****

Normally the children seated between us to prevent fighting, but Mike rearranged the kids so he was sitting next to me.

"Liz, this song reminded me of your dad. Your dad got to meet The Savior. Isn't that amazing?" Mike leaned in and whispered in my ear.

We locked eyes for several moments and smiled, thinking of the joy of such an incredible moment. Imagining my father comforted by The Savior took my breath away. None of us on earth are perfect, Christ has made up the difference for each of us. I have known that much of my life, but today I felt the power of what that means for my father right now. And it consumed me with peace.

I didn't get to learn a lot from my father directly and I resented that when I was young. But today I realized that my experience being his daughter gave me the opportunity to learn the beauty and peace that comes with forgiveness. Although I had limited communication with him, I know I had the opportunity to feel unconditional love for him and from him. Wow, I have to tell you that is like no other gift.

They say time is different in heaven- years on earth might be like the blink of an eye in heaven.

See you soon, dad! Can you pull some strings so I can meet John Candy when I get there?

Dear Dad

Dear Dad,
Just this morning you left peacefully in your sleep. I felt a rush of numbness when I read the news from Amy, then talked Lisa and cried. She made me feel better like only a big sister can. I am grateful for the on-line communication we had and phone conversations in recent months. I wrote a letter 6 days ago I never posted........

***

Saturday, October 5, 2013

Dear Dad,

I never stopped wondering about you growing up. I tried to imagine what it would be like to see you every day. I imagined the sports we would play together and created an image in my mind that has never left me. I daydreamed of this image often when bored at school or alone in my room wishing you were the one sitting in the living room. I always felt a part of me was missing; distant and incomplete. You were that part of me. Unknown. Unreachable.

I remembered that image I created as a girl last night clear as day. Tears rolled down my cheeks as I remember it and I want to paint it for you with my words.

We are standing in a field on a slightly breezy day. We are playing catch, but I cannot see the type of ball we are using. Is it a baseball? Football? Tennis ball? There are no other items around us or in our hands and the kind of ball doesn’t matter. It’s just me and you and we are smiling. There is a soft golden glow and there are tall stalks of yellow grass waving in the soft wind around us. I am very young, maybe 5 years old, and I am wearing an old fashioned dress that also flies gently in the breeze along with my hair. I see no trees around and we are both so happy and carefree. You are also young maybe in your 20s with a genuine smile.  It’s such a safe place; happy and endless in time.

When I went to see you for the first time that my memory can recall, I was 17. You told me you always loved me and missed me terribly. I believed you. I felt it when you said it. You told me a song always made you think of us by Eric Clapton called ‘Tears in Heaven’.  You wondered if we would know you if we saw you in heaven. 

With your health declining and the end of your time on earth approaching faster than any of us would like, I just know it’s going to be like my image when I see you next. We will get to make up for lost time. Time will be endless and we will be smiling. And playing catch, apparently.

Dear Dad: Vol. 3

Dear Dad,

Today all the kids went with Mike and I to the hospital for his radiation treatment. His tumors are on his optic nerve, so the treatment is 5 minutes long. It's week two and he is starting to feel more sick, tired, and dizzy. We can't begin to imagine what your radiation feels like with 4 tumors in your brain and the others in your body that require radiation. I wish I was nearby so I could bring you some lemon candies and sit with you to visit. I wonder if your food has been tasting funny, too. Mike has been reporting this week that everything tastes like soap or metal. He tries to chew strong flavored gum to get rid of the taste. A nutritionist met with him today briefly and gave him a list of flavors that might be okay. They are: mint, citrus flavors, strong marinades like Italian seasoning for chicken, fresh veggies are some of them. Milkshakes have been tasting great to him, too.

Tonight we had chicken in the crock pot with an Italian dressing packet, cream cheese, and cream of chicken soup. Mike said it was the best meal he's tasted in 2 weeks. This is from a man who is a big food snob (I say this lovingly) who is truly mourning the loss of his ability to taste the way one would mourn the loss of a loved one. I told him to buck up because my dad's got 5 times the problems being radiated. I didn't tell him that really, but I thought it would crack you up to type it.

The kids are so happy to get hot chocolate from some fancy machine while they wait for their dad. There is a big fish tank I remind them 40 trillion times to not tap on. There was another kid there today who played with an old community toy shopping cart. When he pushed it around the lobby it made a squeaking sound as bad as stabbing forks in my ears and twisting them. Luckily my three kids distracted him by filling 62 million cups of water at the cooler.

In the evening it was a balmy 90 degrees out, so Evan and I played baseball in a grassy field by my house. I thought of you and how proud you would be of each of your grandkids for various reasons. For Evan it would be his toughness with sports and natural ability to throw like The Incredible Hulk. He has your deep voice and your bright blue eyes. His father is his very best friend and favorite person in the world. He is a master pro at building things (Legos or puzzles or wooden train tracks). He has this natural ability to sense if someone is not feeling well and would be the first to hug a stranger having a bad day. He's also one to turn on a dime if things don't go his way and was the only one to cry when the pet hamster with giant testicles died. He is truly one of those Big Teddy Bear types.

Tell Grandma hello for us. I will call this week to speak with you both.

Love,
Liz

Dear Dad: vol. 2

Hey Dad,
My heart is so heavy for the horrible news of your health. I wish I could fix it. I wish it wasn't so. But for some reason my wishes this year seem to be broken and none of them are coming true! I was glad to hear your humor intact when we talked. I will do my best to write some funny stories while I continue to pray for your health and comfort.

+++

Growing up I took dance. I wasn't bad, but I was also not one of the best. I loved performing and am very outgoing like you are. The start of 4th grade at a new school was rough, as for any kid at a new school, but I was eager to show off my skills at the talent show! I decided on my own to lip sync and dance to a song. It was the 80's and MTV was brand new; I couldn't get enough of it! I was able to tape record one of my favorite songs off a college radio station (a perk of having a big sister: introduced to college radio early). I practiced my moves in the mirror in private for weeks. I just knew it would be the best part of the whole talent show.

The morning of I rummaged through my mom's make-up drawer. No one else was home, so I was on my own. I had no idea how to put any of the stuff on, but figured I had watched my mom do it enough at dance performances it shouldn't be too hard to figure out. On went the bright red lipstick. Smears of electric blue eye shadow covered my lids all the way up to my brows. Rose colored blush was dusted heavily on my cheeks. Oh how I wish I could remember what I wore that day.

I headed to school early and stopped by my friend Danielle's house so we could walk together. I think she was going to do sign language to a song or something really nerdy. Her mom had a red letter 'E' in the window which meant she was always home if someone had an emergency and needed a place to go. I wished my mom was home and had an 'E' in our window cos she was a cool mom. Danielle's mom was mean. None of the kids in the neighborhood liked her. It seemed a waste for a kid to get their mom to be home if she wasn't a nice one.

That morning her mom answered the door with a wrinkled nose and asked about my make-up. I had already forgotten about it on my face. She was a good 15 houses away from mine and I was thinking of my dance routine in my head the whole time.

"Does your mom know you have that make-up on?" her mom scowled.

"Oh, there's a talent show today," I offered as we turned our backs to her and walked to school. Danielle didn't say anything about the make-up, so I only assumed she wished she could have some on, too.

We arrived in the music room and the sweet music teacher was setting up chairs and told us we could practice on the carpet in the front of the room. I plugged in my boom box and arranged the tape so it was at the start of the song. Danielle watched wishing all the while her mom let her take dance, too, and wondered how amazing it must be to be me. I had no fear of performing and could not wait to have an audience later in the morning.

I took my position in the center of the carpeted space; Danielle agreed to push play. The song sprang into the air and that feeling of big kid life energized me the way it did when I watched MTV. I was no longer a 4th grader in my mind in that moment, I was a music video SUPERSTAR! All of my dreams would be coming true that day dancing and singing to a peppy tune.

"Stop the tape! STOP THE TAPE!" the music teacher ran from the back of the room to the front. It had not even gotten to the chorus yet, my favorite part.

Confused, we watched the teacher and waited for an explanation.

"Is she singing about a gun?" the music teacher huffed and puffed with stress in her voice and I stood dumbfounded.

As a kid you don't always listen closely to what the lyrics actually are or even what they mean. Sometimes as a kid you just love the beat or in my case the funny video that's so outrageous and quirky you love it the way some people might find Chihuahua's adorable (they really are not, btw). I was sternly told I could NOT play that song and right there all my 4th grade dreams were crushed.

Here's a clip of the song. The title is Homecoming Queen's Got A Gun" by Julie Brown. Any kid from the 80's that had MTV will know this song (maybe?). It wasn't as popular as I imagined, turns out, once I took it to school.



I wanted to stab out my eyes with forks when it was Danielle's turn in the talent show with the friggin sign language. BOOOOOOOORIIIIIIIIIIIIIIING. That dumb E in her window and now her spot in the talent show. Oh, I was mad and envious and bummed all rolled into one really bad 4th grade day.

The best part about this memory is that no one but Danielle, her mom, and the music teacher knew I planned to perform that day. So I spent the rest of the day with all that make-up on. I am positive I had long forgotten it was on my face. The image of my little self working on a math worksheet at my desk, rubbing blue eye shadow across my face, had to be incredibly hilarious-slash-confusing to my teacher and the other kids. Just spent the day walking around with whore-ish make-up on like it was no big thing.

Dear Dad: Vol. 1

Dear Dad,

I know we didn't get to hang out a whole lot the past 36 years I have been around, so I thought I would start a regular installment of letters to catch you up!

My first letter just had to be about my sister, Lisa. Oh man she has been such a great sister. When my mom was a single mom adjusting to caring for us she really stepped up and filled the gaps of caring for me instinctively. I wish you could have seen it, you would have been so proud of her!

She read me books at a time I was so little I only knew how to drool and eat. My boys have to be PAID to do this for my little girl. And even then they usually refuse. She corrected my language, taught me to coordinate clothing (I didn't pick up on that one too well), and even broke up with my very first boyfriend for me because I was too worried about hurting his feelings (our voices sound very much alike on the phone).

Once we had a not-so-good neighbor who lived in the apartment above ours. She stole things from the grocery store and gave them to us. We didn't know the lip gloss and Smurf coloring books were stolen, but once Lisa found out she felt really bad about it. Mom was at work and Lisa had no choice but to take me with her in the covert return-hot-items operation. We wore sunglasses and walked casually around the make-up department and dropped the merchandise between shelves of Wet N' Wild nail polish and lip stick products.

She is so brave! I watched her fall in love with dance and perform on a stage for years. I wished I could remember routines and do as well as her. It was definitely a talent she enjoyed a lot and even got to be a Pom Pom girl in Junior High. She ruled her advance dance class and rocked at teaching kids at a dance studio when she was in High School.

I was first chair in flute when I learned how to play in 6th grade because she offered to spend time teaching me how to play the week before school started! I had such an advantage over all those other suckers. For the first time I felt so happy at being the best at something.

She always knew how to put on make-up and wear fashionable clothing; she hung out with all the cool kids. She always had a boyfriend and they were always the cutest boys in her grade. She listened to college radio before it was even called 'alternative' and encouraged me always to follow what I liked, not what the crowd was doing. I wasn't a dancer, but a runner (I am not coordinated at all!) and she told me to keep doing it because it was important to be part of something active. She always had good advice, trained me to use good come-backs if someone was mean, and made it clear if I was embarrassing (social norms are important).

She always got A's, rarely anything less. School was a happy place for her to be and she learns quickly and easily. She has amazing organizational skills and a sharp memory. I am opposite of her that way, I admire that about her. When we watched reruns of I Love Lucy we always laughed that I was Lucy; she was Ethel figuring things out and fixing problems. I always could make her laugh, though, and that was my favorite part of being her little sister.

She is more sensitive and delicate. I am a bull in a china shop. She is an amazing mother who had been given a heavy load. I have always admired her way of working hard to press for the unique things Lindsey has needed over the years.

She played Monopoly with me all the time (probably more than she wanted to) and let me hang out in her room while she listened to her latest music obsession (examples: The Monkees, Michael Jackson, WHAM!/ George Michael, Mariah Carey, Pearl Jam). When I was too young to drive, she let me hang out with her and her friends because she knew getting out of the house was important.

While growing up she always kept an eye out for me to protect or help me like a parent. No one asked her to, she just did. I hope my boys can be like that for each other and their little sister.

I watched her my whole life to figure things out big and small. She was and still is a great big sister.  I am so glad I got to look up to her all my life. She made my world less stressful as I grew.

We always wondered about you, together, and would look for your name in the yellow pages at the library for years. I am glad we are corresponding and hope this letter makes you smile.

Sincerely,
Liz

Autism Taught Me

Yesterday was an extremely hard afternoon and evening. My oldest was not himself and I was hating what Autism does to him at times. He had trouble using his words and anger was overcoming him heavily while sensory needs were high. The siblings of this child are too little to understand when this is happening and it's not always easy to comfort them through the process of Autism Child Getting Regulated. Unfortunately, days like that happen when you don't expect it and you may never know what event(s) or variable may have triggered it. You go to bed begging for God to help you know what the child needs and hope it's not a new long-term phase. In our case, I throw in a wish for no night terrors. Stress triggers them and can keep him up crying and screaming in the middle of the night. Luckily, these kind of days are not a regular occurrence and he woke up happy and calm this morning.

****

Refreshed at the lease of a new day, I thought of the less experienced and more youthful version of me. The me before Autism and how she might have expected (unrealistically) for my 4 and 5 year old to sit still for an hour in the heat while we watch my 9 year old have a swim lesson today. The phantom version of me may have worried about what other parents around me thought or said of the way my children acted during this hour. I might have developed anxiety over this concern and even more (plus sweat) at the process of trying to force little kids to behave in an unreasonable way because of what others around me might expect. That version of me might have also worried that people around me would snicker or glare at the boy in the pool who gets corrected more, tends to swim into another lane or splash inappropriately at others. What kind of parents does he have?

Thankfully, Autism has taught me to know better. It has taught me to not give a damn what people around me think. It has taught me there are two people on earth and you can't change them:

1) The person who gets it and smiles at the love you have for your kids.
2) The person who judges because they just simply have no idea (or life experiences to allow for understanding).

Today I am happy for what I have learned. I had the chance to allow myself to bask in the joy of a boy swimming who didn't splash other kids a single time. He worked so hard to correct himself on the strokes they worked on without splashing the coach. He never got out of the pool to sit on the cool deck; refusing to swim like he has in other sessions. He lost his fins and still walked himself over to the lane and got in (!). He tried his best and even if it looked different than the others and he complained about being last, he kept going. THIS IS A GREAT SWIMMING DAY! These kind of days brim my eyes with tears of joy while I sit on the bleachers next to parents whom are usually texting or reading.

I also had the chance to set realistic boundaries for my two little ones who would have to wait an hour for the lesson to be over. I enjoyed seeing them seek out other kids their age to initiate play under a tree. My girl kicked off her shoes and pressed her toes into the dirt. They played with branches and leaves while the ipad sat unused in my lap. I was so pleased for that moment to know from Autism what a beautiful thing it is to watch as they formed friendships easily in ways my oldest is still learning how to do. I am glad Autism has shown me to capture such simple little moments, soak them all up, and hold them tightly. Tonight I can thank Him for this evening. I will go to bed smiling at the memory of hearing their laughter under the arches of an old olive tree. I will grin at the image of those long sun-kissed arms reaching up and over the aqua water in perfect rhythm. It was a great day. Without Autism it would have been just a regular day.

The XX - Coexist (2012) Full Album

Nice album. Do the kids still call it that these days?