4.23.2014

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.

11.16.2013

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......

11.06.2013

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.

10.13.2013

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?

10.11.2013

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.

10.03.2013

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

9.19.2013

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.

8.28.2013

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

8.06.2013

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.

7.29.2013

The XX - Coexist (2012) Full Album




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

Currents

A child's birthday. A hug in the middle of the afternoon. Sitting on the couch drinking diet cokes together talking about anything at all. Lackadaisical pace much of the time. Holding hands while  walking through a parking lot. Touching feet at the end of the day. Kissing at a stop light. A nooner in the middle of the week.  Laughing together at the cuteness of a child's mispronounced word. Pranking. Root beer floats. Two towels hanging together, side by side, in the master bathroom. A calmer home with two parents available to teach, guide, discipline, feed, bathe, clothe, play with, and read to our children. Daily affection. We both recognized how nice simple daily affection felt.

These are just a few of the little things I already miss about being with Mike. We got to hang out as a complete family every day of the week for several months as he recovered. He is back to traveling again today. No one is doing the happy dance.

======

I watched him get to know and enjoy each of our kids in ways he had never been able to before. If nothing else, the family bond was somewhat strengthened during this time. Don't get me wrong, we each had days where one or another needed a quiet moment away. It's a little bummer the family marathon time has come (mostly) to a close. It was an enjoyable summer once Mike was far along in the healing department. We were co-parenting nonstop. I didn't want the boys to leave for school because they were so easy - everything seemed so much easier when co-parenting was happening around the clock!

Each of us will adjust, but Mike will have the biggest adjustment. The pressure in his head with the flights to and fro. Being apart from us- his adoring fans that all try to make him smile all day long. Big distances to walk without available nap time to recover. Large spaces with many moving people still trips his eyes with his compromised vision. He will do well like he always does at any given challenge, however, it won't be easy.

He will be back home again with radiation treatment I wish he didn't have to endure. He will be so tired and attend to treatments daily. It will begin at the end of September. Hopefully that will be the end of his tumor situation and then back to regular life where we can care about less serious things such as weeds in the yard or a hangnail.

6.30.2013

Sunday Bloody Sunday

Today I covered last minute for someone as a teacher to my 5-year-old's Sunday School class. The lesson was about forgiveness in the most basic form. It outlined that we should be like Jesus and follow his example by forgiving people. Even the ones that aren't sorry - essentially the ones that don't deserve it- because that's the way Jesus rolled and let's be like him. The lesson suggested I offer personal examples. I couldn't think of one at the moment, so I made something up.

"One day, boys and girls.........a friend of mine said something that made me feel angry," I leaned in and talked in what I like to refer to as my Snow White whisper. I only use it when I am teaching kids at church and my kids probably think I have multiple personality disorder as they watch me.

"Who was it?! A boy or a girl?" one kid shouted. He was not okay with vague. This threw me off, but I kept going with my nice voice.

"It was.......just a friend." I replied.

"Oh! I know who it was!" My son shouted. "It was DAD!" my son exclaimed to the class like he was winning the showcase showdown with his answer; his toothless grin proud as can be.

The class laughed. I laughed right along with them because let's be honest, this son of mine lives in the same house I do and I can't LIE to a room full of children. AT CHURCH.

"Well, it wasn't your dad I had in mind, but sometimes married people do say things that upset one another. And! What do we do when that happens?!" yeah you just wait for it and see how I turn that whole thing around and bring it all back to the J-Man.

"We forgive! Just like Jesus did!" I was pleased with my ability to smoothly carry on the lesson just as their collective attention span was about maxed out. Next we did interactive role playing. It was important to remind myself how simple the lesson needed to be.

One example I read was of two kids playing catch and another kid pushed the ball away. The mean kid wanted to play the next day and I had to ask the class what they should do in a situation like that. Naturally, forgiving the kid and not being revengy makes sense, but to suggest they keep playing with said child seemed wrong. I sort of felt like I needed more information in this sample. Is it a kid that's not great at communicating and has trouble using his words? Or is it a kid who has behavior issues because his mom does drugs and has no guidance at home? Because these lend to two very different types of teaching moments.

Oh, Bobby tends to punch my kid in the face every time he comes over, but we're working on teaching forgiveness. So, we see it as a learning opportunity to be like Christ. We keep letting him in and telling our son to forgive him and keep playing with him.

And by punch I totally mean being a jerkface. It can be interchangeable.

I just wanted to add a caveat to the lesson (can I?) that some friends are not actually good friends to have. While it's important to forgive, it's okay if some people are avoided. There are times personalities clash at every age. I don't think Jesus expects you to be a doormat. I think he's cool with the idea of you being kind and forgiving to all, but being wise with who you spend your free time with is also important.

It felt wierd to give a blanket statement about 'forgive and keep playing with the kid that's not being so nice to you', but by that point they were climbing under their chairs. I'm pretty sure the meat of the lesson had already been said enough times that part was less significant. I stuck with the manual and will keep those thoughts in my back pocket when the topic comes up with my own family.

Overthinking things may very well be reason #65 as to why I would not be a great Primary teacher.

6.28.2013

no harsher than the bark

This weekend will reach temperatures in the 120 degree range,
so it only seems fitting to be listening to Arctic Monkeys to cool off.


The song 505 is one of my fave by them.
 Quite the gently soaring voice the boy has.


6.24.2013

rat was the new banjo

Today is Mike's birthday! Sylvia wanted to get him violent decorations with pictures of weapons on them because he loooooooooooooooves movies with violence. I planned to get him a pet he pleaded with me to get for our kids on more than one occasion, but I swore I would never allow in my home: a rat.

I psyched myself up for it all week long. He will take care of it, not me. I never have to hold it. If it's ever missing from its cage, we will have a written agreement that I will move into a hotel until he finds it. They are intelligent pets! It will be able to learn it's own name! Mike will be so excited. It's only $20. He really wants one. The tails aren't that gross. I will get used to it. No one can ever make me hold it. I think he liked the black one best.  

Tuesday I felt brave and noble with my plans. Thursday I quivered when I remembered the gray subway rat in NY that ran around like a large, angry cat with rabies chasing the terrified commuters on the platform. Those were filthy rats, ours will be clean and cute. Saturday I talked it over with a friend, "It would be kind after all he has been through this year". Sunday another friend laughed as she told me, "No! He will be traveling again soon and then YOU will have to take care of it!" This pet idea was not one that I was taking lightly.

===

This morning as a family we got into the car to run errands. I stuffed a bandana into my purse and waited until we were done with the first store. "The kids and I have a plan for you, cover your eyes with this" as I handed the bandana that magically appeared from my purse. He put it on, which honestly amazed me. Once I parked the car in the Pets Mart parking lot, he advised me that he would not walk through a parking lot or into any store with a blindfold on. I wasn't sure what I expected, he had already worn it longer than I imagined. After taking it off, he agreed to close his eyes until I told him to open them. We stood as a family in the parking lot and I held his hand and exclaimed, "Open your eyes. We are taking you to get a pet rat!"

He turned on his heel, said "no you're not" and got back into the car. The kids and I remained beside our car in the blazing heat, confused, with no other plan. Mike had already shut his door and buckled his seatbelt. I burned with fury at the disappointment of what I thought was a foolproof plan for an awesome birthday gift. It was going to be the new banjo; something he really wanted that I didn't, but to prove my love I would get it for him anyway. Then he could play a song to his pet rat with the dumb banjo I got him for Christmas and I could write an Ensign article about love and everything would turn out perfect. A perfect birthday in a year that has totally sucked for him.

The rest of us got back into the car with him; we drove home.

Turns out all he wanted for his birthday was a nap. Three of them, to be exact.

He, apparently, only liked the idea of having a rat. Their tails freak him out.

6.21.2013

skittles

Things were truly well for several weeks before fecal matter hit the fan. While we always suspected Mike would need radiation for the remaining tumor nodules in his brain, we had hoped major surgery would not be needed. In May we sat together reading an old Star magazine as we waited in a small office for the neurosurgeon. That's one doctor I hope none of you ever need. We were discussing the many complications that must arise when the conjoined twins featured in the mag courted. They happen to share one pair of sex organs, but separate heads and each control their own leg and arm. What happens if one head wants to marry someone, but they essentially share the same body with the other head? What if the other head didn't like the guy? And how does the single one go about finding herself a man if her body is somewhat married/ occupied? How would you have privacy from the other? There would be no tie to hang on the door, it would have to be noise cancelling headphones and a blindfold for the non-participating head. The mechanics of typical adulthood must be achieved, but how? Mike didn't believe this situation existed, let alone press about one being engaged. He googled their names and Gawker.com was several steps ahead of me in pondering the technical details of such a life. "What does it look like when one performs fellacio?" flashed across his phone as a result of the innocent search. We read it at the same time and an immediate surge of invasion of privacy coupled with visual hilarity consumed us. He practically threw his phone across the room in embarrassment while we tried to regain control of our composure.

Just then the doctor entered the room. Mike retrieved his phone from the floor and shifted his attention quickly to his doctor. It was immediately declared a craniotomy would be needed. The MRI results showed the tumors were growing and that he would also need radiation for whatever would be left afterwards. Mike's vision was tested and showed signs of deteriorating since the last surgery due to the location of one (or more) of the tumors. We would be looking at scheduling as quickly as the doctor could coordinate. That date became June 4th; only 2 weeks away from the moment we were bantering on about celebrity gossip.

We left deflated, long forgetting about those complications we imagined of the love life for conjoined twins. My husband was going to be getting his face cut open, peeled down, his skull sawed through and his brain resected. I can't speak for him, but it's probably safe to say we both felt shock waves of numbness speed through our veins like freezing liquid steel. We had a lot to digest, a bone saw would be used on Mike's head and that's a big pill to swallow. As for the conjoined twins research, well, make no mistake we will get back that another day.

6.20.2013

June 4th

It never occurred to me to measure or determine the worst day of my life until about 9pm on June 4th. I sat next to my husband as he woke up after having a craniotomy. Seeing him writhe in pain while the blood oozed from the 29 staples that held his face to his scalp did something to my insides I had never felt before. The ache of not being able to fix it was beyond words.  The nurses were wonderful at quickly administering what he needed each time he puked up blood and moaned, "oh my head' in a sort of whisper you hear in a horror movie when the final character is killed off with a gruesomely slow death. I felt like I was watching him die of pain. It was like chunky layers of ash filled my insides and my mind cried angry exclamation marks in a marvelously useless manner. I had never before felt so infinitely helpless, sad and hurt as I watched someone I love so deeply suffer. "This is so horrible, mom..." I texted my mother while I curled up on a chair in a dark corner of the hospital room once he dozed off in a medical haze of sleep. She felt the pain of me not being able to help him through the tiny letters I sent to her phone. Her sweet reply was like a digital hug; it warmed me the way only a mother could.

Through the night I sat next to his bed in a chair and adjusted his ice bag each time he moved his head. When I knew he was comfy, I closed my eyes, pulled up my blanket, and prayed his brain and vision would pleasepleaseplease be okay. A number of things can go wrong during and after surgery- we knew the list well and understood the tumors needed to come out regardless. Not removing them could cause hydrocephalus (water on the brain).

While he was in recovery the doctors had informed us one tumor was stuck like Velcro to his optic nerve. They hoped his vision would not be damaged as a result of their efforts. That tumor was cut away, but some remained attached and will need radiation once he heals 3 months post-op. Another tumor remains that was tucked away in optic nerves, but a third tumor came out easily. These were the nodules left after his former surgery which removed the 4 cm tumor mass. None are cancerous.

We learned Mike's face anatomy is different than most and to take away the parts of his skull they planned to remove to access his tumors, they had to cut away some facial (chewing) muscle. It may not work the same once he heals. He is eating fine, but we are eager to see his swelling go down around his eye to watch for any impact to facial symmetry and movement. Also, his sinus went over into his eyebrow area more than most peoples' and some special repair was needed there as well.

Right now as I type this he is next to me in bed with the staples removed and a faint scar line where his skin was cut open. This is the first day since surgery where I sense more of the 'old' Mike peeking through those dark clouds of healing. He is becoming more himself, albeit some swelling is still present and his vision isn't where we would prefer. I feel like the past two weeks we lived slowly hour by hour, but my memory looks back on it like we took a ride on Eurostar; much is blurry.

The outpouring of kindness has made each day sweeter and humbled us greatly. While I prefer to be on the other side of helping, I admit our family has been supported well beyond my dreams with prayers, verbal support, meals, treats, visitors, watching of our kids, fasting, and kind thoughts. The team of doctors has proven this to be the best possible location to live while Mike endures treatment, which to me is a miracle considering this tumor deal has been brewing in his brain for years (most likely began when we lived in NY). People travel from all over the world to get access to the kind of neurosurgery treatment he is getting. While brain tumors are not an ideal situation to say the least, it's incredible to take a moment to appreciate the little miracles we have been granted along this ongoing journey. Thank you for reading and being part of it.

4.27.2013

Tumor. Lovin'.


Several months ago when we found out Mike had a tumor people started playing violins outside our front door. There was an overwhelming amount of unspoken pity for our family, rightfully so. I mean... brain tumor. Just typing is make my stomach twirl in knots. As time went on and information came into play our little family settled in for the process, ate all those yummy treats and meals we got while appreciating the concern and love offered us.

When we walked into church and sat down for the first time after his surgery, I realized we were THAT family. You know the one. Where people watch you walk in and they have horror behind their eyes at the thought of being in your shoes. Then they quietly bow their heads and begin silently praying to God- thanksgiving that it's not their problem to face. I've done it before, I admit it. I caught the eye of a friend across the chapel who tossed me a knowing half grin as if to say 'I wish it wasn't you guys. I'm so sorry.' We wished the same, but nothing can ever be wished away; it turns out.

I did think our family would have at least a decade's break from hardship. The grief of accepting and struggle to learn of my oldest having High Functioning Autism about broken us in half. The same year we were adjusting to life with our third child I was hit hard with severe post partum depression (plus) while Mike (all the while) was traveling for work on weekdays. I thought we had our fill of climbs uphill, both ways, barefoot  in the snow. Nope. Apparently not.

Even still, today I want to tell everyone we're okay. I want to show up to church and hand out fliers. Sign language it to the masses during the opening hymn. Assure and comfort every wrinkled forehead that asks about his brain. You see, as weeks went on he had adrenal failure and we found out most of his pituitary gland was removed with the tumor, it still turns out alright. He will always take hormone supplements and testosterone injections, but it could be worse. I mean, to tell you the honest truth right now I don't think either of us have been happier or closer with one another. Sure, it's mostly due to the fact that Mike now sees me through thick testosterone-colored glasses and can't keep his eyes (or hands) off me. We liken it to the mind of a 16 year old boy seeing porn for the first time. His thrill for me is nonstop and the attention is as if I have become a celebrity overnight.

It also helps that I put on some healthy weight gain by eating my way through the stress. Some of this gain happened to spill generously into the boulder holder area. I like to consider that another of the Lord's tender mercies. Each morning when I get dressed I offer up a wink of thanks. We can now plan on something else to spend his annual bonus on instead of a plastic surgeon!

So don't feel bad for The Fullers. We really ARE doing okay. Better than before, actually. We're kind of like a coupla blissful newlyweds, really. And if you happen to see scratch marks on either of us don't be alarmed. We didn't get a cat,  it's just his synthetic testosterone bringing us closer together.

4.13.2013

3rd Grade Liz


When I was in 3rd grade I had my very first head-over-heels crush. His name was, well, to protect his privacy I will call him Arnold. I religiously watched the t.v. show The Wonder Years and this boy was a spitting image of Fred Savage.  Naturally, I determined in my third grade mind that he was going to be my husband. I have no idea if that's a normal thought for little girls, but it was as real to me as the skin on my body that selecting a husband was important work and claiming my own before any other girl could seemed to be an important 3rd grade priority. 

I made it known to everyone that I liked him. I would stare at him all during class and wait for his attention. Somehow I was born with a great deal of self-confidence. Probably about 60% more than I should have, but I know no other way to go about my life than to pretend I am awesome. Sometimes it has led to situations that are not ideal, like in this post, but it has also served me very well in job interviews. So, I just go with it as much as possible. It never once occurred to me that this boy, Arnold, would not like me back. The chance mistakenly never entered my mind. When he didn't write notes back, I assumed he was awe struck by me and speechless. Or maybe he had horrible handwriting? When I finagled his phone number from a friend and called him, it never occurred to me he was choosing to not call me back. I just figured he wasn't allowed to use the phone. Or maybe he  never got my daily messages?

One day we all arrived to our 3rd grade class to find the desks were moved. We all entered the room eagerly to see where our newly assigned seats were, but were instructed to gather around the snack table first. The teacher brought muffins to class so we could be more comfortable with the change. No one really ate the muffins for some reason, but I thought they tasted good and had several. I also  finished 3 of my friends'.  After the snack, we went to find our desks. They were connected in a way to make a giant  U shape so we could all face the teacher in the front of the room.  GUESS who sat directly across from me? Arnold. I KNOW. I know. It was just as exciting as it was to open my Guess watch on Christmas morning.

I did everything I could all day, everyday to get this boy's attention. How my teacher never pulled me aside to teach me a little about grace is beyond me. One day I came up with a clever idea to make absolutely certain he was aware of my affection. I figured it would at least get me a phone call. While the teacher was blathering on about something and all the other children were taking notes and watching her, I was secretly writing on the bottom of my pink high-top Pro-Wing shoes with permanent marker. As soon as it was time to take out our books, I leaned back in my chair and kicked my feet up on my desk like a boss. On the bottom of one shoe in large print read: I  LOVE   and on the other shoe read: ARNOLD.

I kept my feet up on the desk until he noticed. He immediately blushed and a huge smile flashed across his face. My tummy swarmed with happy wiggles.  Though he tried to hold it in, his laughter at the sheer unexpectedness of my display got him chuckling. I knew I had won him over. Big time. No other girl could have thoughts of such a brave thing. For sure he wants to marry me, I thought.

Well, his giggling led to my nervous giggling. My friends were amazed I would do such a thing. And then a curious thing happened that would redden even the most outgoing of spirits. While balancing my bum on the fiberglass seat of my orange chair, a loud fart reverberated off the seat and shot into the air.

FRRrrrrrrrrrrrrrrrrrrrrrrrRRRRRRRRRRRT!

It was so loud and high-pitched, there was no hiding it. Nor the source. I quickly pulled my legs off the desk (mostly to avoid more farts- I would have left my feet up there all day to amuse my dear Arnold if it pleased him). I began to sweat from the hysterical laughter that the class (and I) commenced in. No one had to ask 'who was it' because of the way the classroom desks were arranged.  The girl setting to my left was horrified on my behalf and whispered in pity, "Liz, it was all those bran muffins you ate. Don't eat anymore!" I paused my laughing to ask, "What's bran?" The girl on my right couldn't even laugh she felt so bad for me and seemed like she was in pain at all the attention I had drawn to her side of the room. "I would die if that was me," she was bent over hiding, pretended to be looking for something in her desk until the class settled.

The boy never called me. I continued to crush on him the following year, but lost interest in him shortly after.
We crossed paths in a college course and he told me I looked like Liv Tyler! How awesome of a compliment was that? She is WAY hotter than Winnie any day!

To his day, I haven't since touched a bran muffin.  

4.02.2013

won't stop


I keep asking him to, but this one. He just won't stop being so dang cute.

3.27.2013

Fun! With Shingles!

Over the weekend I decided I was completely o.v.e.r. the seemingly eternal cold that had me sneezing and sniffling for well over a week. Pressure in my head was building and a strange burning sensation had developed under my right eye. Urgent Care deemed it a sinus infection (plausible) and cellulitis (celluwhat?). Prescriptions in hand, I felt so glad to have an answer to the strange heat radiating from below my eye. Intense weariness had plagued me during the week and through the course of the day the burning under my eye began to spread down my face. Before dinner time I was packing my ipad to head over to the emergency room. My chief concern was the increased pressure and pain that developed around my right eye. My face was half puffy, red, burning, and curiously itchy.

I was home by midnight freshly unplugged from the iv fluids with antibiotics that flooded my veins and a positive CT Scan showing slight swelling in the tissue around my eye. The pressure in my face remained and it was not the best sleep that ever was. In the morning I got in with my general practitioner. At this time my symptoms had gotten worse. Bumps had sprouted throughout the entire right side of my head from my hairline on back. Within 5 minutes she slapped a 'shingles' diagnosis on my hot mess of issues.

That's right, my friends. 35 years old with shingles. If Mike ever leaves me, it's going to be my tagline at eHarmony. And you know, it's a funny one. I think it would work! You can use it if you want to.

I just need to take a moment to document the kind of pain this illness delivered. If it needed a yelp rating it would be five stars in the pain category. I was rolling around on the bed, holding that hot, burning side of my face with my eyeball pounding out of its socket groaning to Mike, "I need an epidural. I can't handle this any more". Only, this time I wasn't in labor. So he just sat there watching me with pity and calculating the number of hours until he could collect more Ibuprofen. It was the kind of pain that induced a converted (non-pure blooded) Mormon like myself to exhale the eff word subconsciously. Because no other word or sound could adequately emit the level of pain that was happening.

It was the sort of pain that left me considering the quickest way to rid of it in most illogical ways. It spread down into my mouth, wrapped around my jaw and crawled across to the front of my teeth. I was partially convinced all of the teeth on the right side of my mouth were rotted and needing root canals. I kept flossing and brushing my teeth, looking for any evidence of malice. You see, it turns out this shingles of mine on my face and head would not cross mid-line. The left half of my face looked and felt completely normal. Thank goodness, because dreaming of  pulling 14 teeth to alleviate the pain instead of my entire mouth was plenty to consider. At one point, the thought of removing half of my jaw would be a great solution. Sure, there would be blood and pain, but it would scab over and end. The shingles had a radiating, unstoppable, writhing pain that needed to be cut immediately from my body.

In sum, if you want to know what shingles feels like, have someone smack you repeatedly with a cast iron skillet to the side of your face. Ensure fierce contact with eye socket and jaw for full effect. Then, pour bleach over half the face and burn gingerly with cigarettes on the eyelid, side of the nose, etc. Additionally, ram several long, thick needles into the eye and tap the temple with a small hammer, but use great force. After all that, I won't bother to tell you about the itchy bumps in my hair. Those were nothing compared to all the rest.

I am super duper over the moon that I have not developed black scabs on my face like one doctor advised may or may not happen. Go ahead, Google image that bad boy. It looks like the freaking plague and somehow I didn't get that. High five to the Illness Fairy for sparing me that nasty detail.

Thanks to modern medicine I am feeling a lot better and still have all my teeth and both sides of my jaw!

3.20.2013

Runaway Stroller

When I first met Lindsey Johnson we were both living in New York and attending a Father's Day picnic at a mutual friend's home. I was new to the area of Westchester and my lovely memory has no idea where she was living right before being planted in the same town as me. The name of the town is Tuckahoe, which a hilarious friend later suggested might as well be called Slapab*tch.

I remember being struck with two things:
1) her amazing hair
2) that she was a New York Nanny and moved there all alone to try it out!

I was immediately impressed with her story of what I consider heroic bravery to take on such an adventure and completely alone. Fate had it that she would meet her husband, Fred, in New York and he turned out to be even more quirky than I initially imagined. He was highly educated, well dressed, and a young, official librarian. Mike and I had found a perfect friend match with Lindsey and Fred- they were delightfully different and we wanted to know more and more about them. The men geeked out on talk about history and war while us girls eventually began to talk of our swelling baby bumps.

Before they were born, we decided our kids would have an arranged marriage. Getting that amazing hair of hers into my posterity's eventual gene pool thrilled me. Side by side we stumbled into the joys and bumps that accompanied the newness of motherhood.  Our friendship filled the gaps in my heart where my husband was working hard at a full time job and night school getting his MBA while I fumbled into parenthood muchly solo. We could laugh and cry together about our kids' diaper blowouts, getting puked on in public, and the first time our babies were screaming their heads off in line at the grocery store check-out. These were all new experiences to us that were strangely funny when we could share them with one another. Experiences that truthfully were flat-out gross and unwanted, but we eventually learned were par for the course as young moms in the trenches of raising kids.


Not only was she funny, smart, brave, laughed at my jokes, could relate to my motherhood snags, but the girl could cook and bake. I will never forget when she invited me over for lunch. She made this amazing tortilla soup and then busted out the most amazing variety of cookies (homemade- all of it!) that have ever entered my mouth. I didn't know what it meant to be a foodie, but I had just landed in friend jack-pot y'all. YOU HAVE NO IDEA HOW GOOD THIS WOMAN'S FOOD IS! ps. When she invited me to see Willy Wonka and we both snuck in 10 pounds of candy each, I knew we were a match made in heaven.

She made me feel so normal at a time in my life when I felt very much lost. We have so many great memories. Some are of learning how to take care of our new babies on the go (The Met!) and others of meeting up for a slice of pizza with our laundry quarters just to escape cabin fever on a wintery day.

Aside from my short-lived career and baby boy, her friendship was the best gift New York gave me. To put it simply, it sucked when we decided to move away.

I have learned and been so inspired by her near and far. It's been such a treat to see her many talents explode on the internet with her photography skills, writing ability, intelligence, cooking and baking perfections, and great sense of humor. I love my family and all of my friends, but I would say if I had to be stuck on an island with one person, she would be one of the people at the top of my list. Mike's name would be above hers, but mostly because I like to have nookie with him. I wish I could be sitting next to her hearing her laugh at that line. She has the best laugh.

Today is Lindsey's birthday! As I picked up the phone to call her my throat choked and tears welled in my eyes for the friend I miss so much. I wasn't expecting to get emotional over a phone call, but I think it says a lot about the kind of friendship we got to have.

I have several close, best friends here in Arizona that took me some time to find. I think they are all special and I adore them all equally for different reasons. But nothing ever mends the tears left in your heart when you have to move away from a best friend.

You can find her amazing food blog here.
She is also a regular contributor on Design Mom here.

3.18.2013

Of Stake and Steak


Instead of the trip we had planned for Barcelona, just the two of us, we are home getting Mike's brain tumor(s) evicted. This was the week we would have been exploring a little bit of Paris and a lot of that town in Spain we have heard so much about. The oddest thing is I haven't thought much about it until our kind friends felt bad for us and sent us delicious cheese. It's one of many acts of kindness our family has received during the past several weeks. Barcelona isn't going anywhere. We will see it one day. This just wasn't our time for it.

I have packages of adorable thank you cards to complete sitting on my desk. I have great intentions of filling them out, but always feel overwhelmed by the volume of names that comes to my mind when I think of all the support we have been offered by friends, family, neighbors, and people from church. While Mike was in the hospital and during early days home my kids were driven to school, grandparents spent the night or tended to my kids, my house got cleaned by friends, treats were dropped off, meals were brought in, flowers were left on our counter, prayers were offered, our names were placed in the temple prayer roll, emails were sent to us, and calls of concern came in. I am certain there are more acts of kindness I may be forgetting.

It reminds me of a tree we have in our front yard. When it was newly planted, it needed stakes placed in the ground around it so it could sustain the strong winds that may come. Large, wooden rods were driven into the ground to surround the tree. Wires connected to the wooden stakes wrapped around the trunk of the tree. They remained until the tree was able to weather wind unsupported. We felt supported much like that tree in our front yard that required some help for a bit of time. When something difficult happens in a family, the love and kindness people offer really does keep you strong. Those people were like the stakes next to the tree while the winds came and it was as if their actions whispered to us: We are here to catch you and hold you up. We will not let you fall.

I am also reminded of Amelia Bedelia's adorable book series where she is a character who takes directions literally. When Amelia is asked to stake the beans, she ties steak to them. This is a symbol of the joy we have had as a family enjoying the silly things our kids say and do. Mike and I don't normally have the luxury of enjoying our children together on weekdays as my husband travels for a living. He was home for a total of 6 additional weeks and during that time had a lot of pain and healing to do. He also had the opportunity to spend solid bonding time with each of our children. We have had the pleasure of quality family time that sewed our hearts together in ways we never experienced before.

It's been worrisome, this tumor situation, to say the least. However, we have also felt The Lord's hand with the kindness of others like angels on earth surrounding our family. The love in our home has grown exponentially with all the time we have been able to spend together. I hope to remember the things we have learned and always have our stakes ready for another family that might need them.

3.12.2013

The Middle Child

 Middle Boy and I

In our family, our middle child is between a princess baby girl and his unique older brother on the spectrum. He's got it a little different than a family of typical kiddos as a Middle Child. Not better or worse, just different.

I think about each of my children often and speak regularly with my husband about their needs, strengths, areas of struggle. We identify together ways to make them feel special and have one on one time with each of when we can. I give him tips through the week if one of the kids is having an especially hard time so I can prepare him for what's coming once he is back from being away. He comes home filled with energy and ideas for how to spend quality time with each of them. This has taken time for us to get this right. It's not a perfect system, but it's working in a way that we both feel pretty good about.



Tonight I stayed up a little later with my middle guy. We lay together on the trampoline looking up into the night sky. The stars were twinkling brightly and the crisp air was just right; no need for a blanket. With our shoulders pressed together and holding his strong, soft-skin hand in mine we talked about our favorite stars. It was nice to slow down and enjoy his company. I took great pleasure in the peace and quiet of the still evening as we were surround with fresh air and softly chirping crickets. We talked about this great place we live on earth and about how far away those stars are. We laughed together as we though of a silly moment we shared with his dad over the weekend. He told how much he loved building awesome Lego spaceships with him. It was good moment to explain a little how his dad isn't always home every night because of the career he has, but that he is a really good dad. We agreed that we both missed him. I just watched our middle child smile as his eyes searched the sky while he was thinking about how much he loves being with his dad. It was a beautiful thing to see.



3.05.2013

Joy and Beauty

I recently had the privilege to visit my friend who has breast cancer. She is in the starting phase of rigorous chemotherapy sessions on a regular basis. My mind has trouble wrapping itself around the idea that a) my sweet friend who is the kindest soul in the world would have this trial b)someone I actually know has breast cancer c)she is so young to have something so terrible to face, isn't this an older ladies' issue?

Of course, cancer (as with many trials such as tumors, etc.) knows no discrimination.

As we arrived at her home I was struck by her beauty. They say pregnant women glow, I have not seen that very often. My friend with breast cancer, she was glowing a beauty I want to try to explain. She was in the midst of a good week, not as tired as the past two. It's my understanding when chemo hits her, it hits hard and she gets very tired. On this day when I arrived she was so happy. Her hat hid some of it initially, but once she took it off her shaved head was revealed. She worried it would scare my children. It did not.

When I looked at my friend and her long, curling eye lashes it was as if they stretched for miles. Her skin tones blended evenly from her face to the rest of her head,  a natural blend no tanning effort could try to replicate. Some of her soft stubble was growing back, which looked to me like the kind of fresh life you see in the spring when the buds of flowers make their appearance on stark branches. She was comfortable with her perfectly shaped bald head. She was confident in it. She was smiling. As she moved about her kitchen I couldn't help but notice the grace of her long neck. She was like a gorgous swan. She was truly grateful, most of all, for the small amount of energy she had to attend to simple tasks such as preparing salad and playing hide and seek with the little children buzzing around. She was eating up life with each moment with a kind of joy I rarely appreciate with such minute tasks. She spoke of the bounding happiness that accompanied a great day in contrast to the slow, sleepy days when the medicine killing her cancer slows her down. She spoke of the true understanding gleaned in the thought only through knowing hard times will we appreciate the good. Her words were more eloquent than this, but the way she said it zapped in me a little glimmer of her beauty that was truly radiating from within, as well.

A heavy sadness filled me, despite her beauty and energy; when we sat for dinner. I queried her on the long road ahead. It is paved with hard medical procedures that will be far more challenging to overcome than shaving her hair off and weariness. It seemed unfair to sit with my hair in a bun and no appointments of my own to face. I could not lift her burdens or lighten a single one of them in ways I wished I could. I can only love her, learn from her, and appreciate life more sweetly.

2.26.2013

heart.breaker.


photo from the archives (circa 2007)

I picked the kids up as usual at parent pick-up. I anticipated a happy report of boys that tried hard all day at making good choices. We planned cupcakes for snack, we planned to make them while Z was at chess practice. That's not how it all went down, after all.

Z got into the car without much responding when I asked about his day. He quietly asked to skip chess today. This is not unusual, but I noticed there was something about his demeanor that was different. As I pulled around to another drop-off for chess I noticed his heart beating fast when I looked at his chest. I asked him if he was okay and after several efforts to mumble and hold in his feelings, he finally said, "I'm feeling blue. I hate Autism. Why do I have to have it? Why does it have to be ME?'

I have never been in a physical fight with anyone. No one has ever hurt me with a kick of a boot, but I am telling you that moment was like The Hulk kicked me in the sternum it hurt so bad. I knew one day it would come, but there's no preparing for it. It's one thing to have my own grief to overcome,  but his new understanding of this and his grief  seemed at the moment an almost unbearable pain.

He dove his head into his hands and began to cry. I tried to find the breath that was knocked out from within me so I could help him through this. I reminded myself the need to let him be in this moment. Let him be mad about it like I was when I learned about it just 3 years ago. Just be with him where he is. Don't try to fix it or push away the feelings. Just sit with him and let him feel it. Let whatever kind of time it takes to sort out and communicate his feelings. Listen. Empathize. Then help him move on. These thoughts were placed into my mind as I rested a hand on his back and rolled away from the school. There would be no chess practice today, but BY GOLLY THERE WILL BE CUPCAKES!

Keenly aware of the two happy children chattering away in the back of the car, I whispered to Z that it would be best to talk about this at home in private. I wanted to be sure he had my full attention. Once we got home, he could sit on my bed and I would be in to talk about it with him in a moment. He did not resist the notion and did as I suggested. This meant a lot to me and the kind of relationship I have always hoped to have with each of my children. I hope they tell me what they feel; I want to be their safe place to talk about things. He was doing just that.  What a wonderful, fabulous moment to be home to share with him. A hard one, but important and precious.

I got the television arranged for the two littles and found him laying on the bed with swollen eyes and sad face fixed on the ceiling. I nestled in next to him and just held his hand. He didn't have a lot to say and nothing specific seemed to have happened today. I felt an inspired wisp of words come to me that were genuine and strong. I told him of the important things that will come of his life despite Autism and that it will not get in the way of him having a happy, full life. Yes, some things may be harder, but many things will be easier and give him opportunity. We said a prayer together and both wiped away some tears.

Then it was time to get a snack- popcorn was his choice and some cartoons helped ease his mood further away from the blue zone. I suspect it will return when he least expects it. I hope he remembers the importance of who he is and how amazing he is. But if he doesn't, that's okay, too. I know his parents will always do their best to remind him any time he needs it and even when he doesn't.

By the end of the day the blues had been fully chased away thanks to a play date at the park with a new friend, hooray for XBOX Kinect, a loving brother, and hot dogs.

2.20.2013

conversation



One of the early tricks we learned when our son was first taking speech therapy years ago was the need to practice conversation. I had not thought of it much before learning about Autism, but it's a common challenge for these kiddos. While he was little he was not responsive to many of my questions, but I just thought he was shy. Honestly, I didn't know why he was so quiet. I didn't know why he didn't respond when I said his name or why eye contact was always a challenge. He was my first, I had no idea until a Speech Therapist came along that these were concerns.

We know a lot more now. One little game that's easy is conversation ball (or catch). The rule is someone starts a topic and the person that gets the ball next has to ask a question or make a comment ON TOPIC.

Isn't it fascinating that this isn't automatic for some unique minds? I often have to remind myself there are things I take for granted like conversation skills that just developed naturally while it takes extra time and strategy for others to learn. This is what it looks like:


Me: Oh, I LOVE Christmas! It's such a fun holiday!

Q: What is your favorite thing about Christmas?
or
Comment: I like Christmas, too.

With someone else's topic of choice (if it's not video games) this is where we are. And it's a beautiful thing! What used to be silence or "okay" after attempted converation is starting to look like a really short and adorable game of verbal ping pong! There also used to be off-topic answers, so we would say or hold up a cheeseburger card and say WHOPPER! as a silly way to remind someone they were off topic.

Next week we will be working on changing the topic gracefully.

2.04.2013

sleepy tigers

While trying to offer our minds healthy distraction from the worry and information overload of the past several weeks, we have turned to Pandora any moment possible. His fave station created is M83 and mine has been Her Space Holiday.

I decided this tiny little love song quickly became ours as we fumbled through this experience together. I have not yet listened to a single song by Her Space Holiday without giving it a happy thumbs up.


1.31.2013

crammed in my cranium

I made my way through the heavy doors right behind the nurse. She was taking me to see Mike as he recovered in the ICU unit at Barrow's hospital. I counted the shiny floor tiles with each step I took. We passed several patients with tubes coming from either a mouth or a neck. Each person we passed looked worse off than the prior. What would my husband look like? How would he be feeling? What can I possibly do to help him? 

****

Above is a sample image of where a pituitary tumor it located when it grows in someone's head (that's not Mike btw). His was about the size of a golf ball and nodules have grown from it extending into other sections of his brain. Some of those nodules still remain. It will be determined in 3 months what will be done about them.

The procedure he just had is called transsphenoidal surgery. Fat is grafted from the abdomen and used to close back up the sinus cavity from the brain cavity. There are samples on You Tube that demonstrate how the surgery works.

****

I slowly pulled the thin curtain that hung between my concerned being and his lifeless body as it lay on the hospital bed. He no longer had a breathing tube coming from his throat, but his mouth was shaped in an O as if it was still in place. An oxygen mask hung from his neck loosely and the soft mist helping him breath was beautiful. His pillow had greenish/ yellowish stains on it as if someone left an otter pop there to melt. Only it was no color I could identify among the usual otter pop characters, nor could I place what portion of the body created this color of stain near his head. There was a spot of blood protruding from his forehead. His eyes were closed and incredibly swollen. A large rectangle of gauze was taped across his nose. It was saturated with blood that was draining out of his head through his nose. While a logical occurence for this type of surgery, it was easily one of the most disturbing images I have witnessed in my life.

What did they do to you? was the question that kept running through my mind.  I asked the nurse if all the things I saw were normal for a patient like this. His whole face was swollen as though 73 more layers of skin had been added below the top layer. His left shoulder was exposed, so I put my hand on it gently. I just stood there with my hand on his shoulder looking at his puffy eyes feeling incredibly helpless and concerned for how this was going to feel once he woke up.

With his eyes closed he stirred and tried to sit up. I spoke softly, 'It's okay, rest. You are all done." He asked what was all done. I replied, "The surgery, you are done!"

He immediately asked, "Did  they get it all?" With puffy lids still resting heavily over his eyes, he was able to ask an intelligent, logical question sixty minutes after brain surgery. I bet he would have been able to manage quantum physics if we tried. Such an over-achiever, this one, even with trauma.

"We don't know until tomorrow's MRI. You did great! Just rest." I kept my hand on his shoulder. Any time he groaned of his head hurting and feeling nauseous the nurse quickly fed his IV with fluids to comfort each. He told me my touch felt good on his shoulder and asked me to keep it there. He was out of surgery, I would have spun to the moon and back if he asked me to.

As he slept I cleaned the blood off his fingers and forehead. I requested his gauze be changed. I asked the nurse about the forehead. She said it was where they had to screw his head in place so it wouldn't move during surgery. A millimeter of movement in surgery could cause a lot of problems. No one told us about that part. The image of a screw going into his head sent shivers through my arms. She assured me it would only leave a little dot and heal well. Compared to the whole procedure he endured,  I am not sure why I cared so much about that little detail. I supposed because it was most visible.


Mike, I dedicate this Frank Black video to you my love.

1.09.2013

A post about love.

 I just wish I could shrink myself into a tiny ninja fighting amoeba and get rid of that tumor for him. It would be like this video. Only I would sneak in through his nose with my swords to get to that pituitary gland instead of going into a building through a door. Otherwise, it's just like it.


Brandon Flowers - Crossfire

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