Colorful World

Me & Lily

I was tired. Barely two days had gone by and I had labored 22 hours giving birth to our second baby girl, Kaylei. Our first day home, it was 2 am and I was still up. My husband was long asleep as was our other daughter, Lily.  At 15 months, I dare call her our oldest. I was just turning out the lights and grabbing the baby to go up to bed when I heard the oddest, gurgling noise coming from the baby monitor that was in Lily’s bedroom. Listening at first, I wasn’t worried – sounded like the croup to me. I can remember my baby brother having that when we were kids. My mom put him in a steam bath and took him to the doctor the next day. I put Kaylei down and started the shower on the hottest setting so the small bathroom would be nice and steamy by the time I had Kaylei settled and could get Lily in there. I grabbed Kaylei and the cordless so I could call my mom just to make sure I was doing this all correctly. At the tender age of 23, maternal instinct and a mother who already raised three kids was all I had to go on. I dialed, silently cursing to myself that I even had to call at such an hour – I hated to wake my folks.

I snuggled Kaylei into the cradle by my bed, watched the hubby and family dog drooling on the pillows and rolled my eyes. One ring…two rings…and my dad answered the phone. I told him why I was calling as I walked into Lily’s room then stopped short, horrified by what I saw next. I screamed into the phone, “She’s having a seizure! I have to call 911!” There she was, my baby girl, on her stomach, drool spilling from her mouth, that guttural breathing I heard through the monitor. I screamed for her dad to wake up – but he couldn’t hear me, I couldn’t hear me – all I could hear was her breathing. All I could see were her eyes rolling around in her head, her forehead drenched in sweat, her body shaking. I shook out of my paralysis and dialed 911. The operator came on the line and asked so many questions, she was wasting time! I did just what she said, I lifted my baby girl’s chin up so she wouldn’t choke on her saliva and I stripped off her sleeper because she was so hot. I thought to myself – this was my fault! I put this sleeper on her and it was too hot! I made this happen – I made my little girl have this seizure! The paramedics came, pushed through to us and I crumbled. Scott was up by now, he heard me – I must have screamed at some point for him to wake up. I couldn’t stand anymore. The weight of my body hung too heavy. I crumpled to the floor and cried. I shook. I was so scared. There were so many people surrounding my little girl, I couldn’t watch anymore. My mom came too – I can’t remember when.

The ambulance ride to the hospital took too long. That little girl, my Lily, so small on that stretcher looked at me but couldn’t say anything. I just cried.

It would take many more seizures, many more ambulance rides and many more doctor appointments to find that Lily had a seizure disorder. She was medicated, and for the most part her medication controlled these seizures. As long as she didn’t spike a fever of 102, she was alright. There was; however, a change in my little girl as she began to have these seizures. Slowly, her behavior started to change – or maybe being our first child, we didn’t notice as much until the second bundle came along…it’s hard to really say.

Lily’s milestones were regressing. Her vocabulary came to a standstill. Her eye contact was nearly nonexistent. Her toys could only be played with, if stood in a straight line. And play with others? Certainly not. Lily was in her own fantasy world where the characters there were enough to keep her company. Yes, my daughter is on the Autism Spectrum.

Perhaps I will be ridiculed for putting such raw, honest feelings on screen but anybody that has an autistic child knows this…whether or not they will openly admit it, well, that may be another story. Sometimes being a parent (or caretaker) of an autistic child is tough, it’s frustrating and damnit, some days you want to cry because it’s hard. The knock-down-throw-down fits, the sometimes violent behavior, the loud yelling (yes, she’s just playing…), the picky-I mean-PICKY eating, the not knowing how to punish fairly (I know she knew this behavior was naughty, but I also know she acted out because she was over-stimulated – what do I do?)…..and most of all, I think the hardest and exasperating part of having an autistic child are the other people that don’t understand.

I had a particularly rough day with Lily and, to be honest, I was glad it was bedtime. I was tired, she was tired, and Kaylei was tired. We were all beat – it was an emotional day. I lay with Lily that night until she fell asleep. We were nose-to-nose and she looked at me, straight into my eyes. Have you ever looked into the eyes of a child? Clear and beautiful, shameless and innocent – they don’t hide emotions like adults do. There is so much we adults could learn from children where honesty is concerned. I looked into her beautiful blue-grey eyes. Stunning, she has the most stunning eyes. Her little nose turns up ever so slightly. I just admired how beautiful she is and appreciated her for who she is. Then it hit me. This little girl is brave. Here I was frustrated today, angry and at my wits end and I am not the one who has to live with this disease.

Studies on autism have shown that people with autism see the world in pictures. I saw a news special, about an autistic guy that saw numbers as colors. I’ve noticed in Lily that all of her senses are hypersensitive. She can’t stand her hair brushed because of how it feels; certain fabrics drive her NUTS – in fact, the kid would much rather run around with just a pair of underpants on than be dressed at all. Her sense of taste is so hypersensitive that she eats toasted cheese sandwiches three times a day with a side of string cheese and a banana with an apple juice wash. We went to the circus and the poor kid couldn’t get out of there fast enough. Scary clowns? Not even – the noise was too much to bear! The lights too dim and then too bright and let’s not even discuss the people! Over-stimulation at it’s best! What was I even thinking?

I was laying there gazing into her big blues, I had a profound ah-ha moment. This is not my battle – I don’t wake up each day battling the world of senses and constant misunderstanding. I don’t hate school because I can’t learn the same way other kids learn. I don’t communicate and express emotions in a way that many people don’t understand. Yes, this child is the bravest of the brave. And yet, there is no other kid happier than she.

Confidence...Where Does it Come From?

I have often wondered where does confidence come from – and why are there times when I feel like a small mouse, meek and helpless, afraid to speak even of my own basic needs…while other times, I feel like a giant – boisterous and demanding – unafraid of anybody or anything?

Does confidence come from other people? The crowd we are surrounded by? Does confidence come from deep within ourselves…does it come from a higher power, such as God? Does confidence come from medications like Prozac, Abilify, or Zoloft? Maybe none of these, perhaps age is the deciding factor?

Here is my take on confidence…from personal experience, of course. I always was a confident person, even as a child, my mother will tell you that I was not afraid to speak my mind….I do apologize now, for the sassiness that entailed as a child (sorry, Mom and Dad)…while certain events in my life transpired, events that I’m sure will be shared at one point or another, my personality went through changes and that fiery confidence that once shined so brightly, seemed to whither away replaced by a quiet and withdrawn melancholy. The confidence would come and go….but it was now dripping with anger and heavy laden with defiance rather than light with mere challenge. Eventually, we tried the Prozac, the Abilify and the Zoloft…and confidence still wouldn’t shine through - - not like it used to. As I aged slightly and became a mother, the “mother tiger” in me took hold and when needed, I took care of the cubs with great confidence, it was still there and it was strong, indeed. I noticed as I weebled and wobbled from one end of the “God” spectrum to the other, my confidence weebled and wobbled as well. I have only recently put together, in an “ah-ha” moment, that only in Christ am I confident in myself…because only in Christ am I really myself. Therefore, for as long as I had been fallen away from the Lord that I felt lost (and believe me, did I ever feel lost) my confidence was terribly low as was my self-esteem. The minute I re-committed my life to Him, I could just feel those heavy burdens lift off of my shoulders. When I am being untrue to myself, and untrue to who God wants me to be – I am not at peace and I am not confident in what I am doing. Joyce Meyer has an excellent book called “How to Hear From God”, it’s one of her older books, but she goes through an entire chapter on finding peace…it’s truly amazing – and it’s amazing what having that peace between you and God does for your confidence.

I just have to share an example of this peace. This was a completely new concept to me prior to reading the chapter in this book. I have always felt that I was this terrible misfit in most social groups and with all of these different types of people…it really got me down and upset me. I stopped doing a Bible study at church because I felt I didn’t fit in with the other ladies…it was not so good, my confidence was terrible. I would have anxiety attacks before the study started, I dreaded going – but at the same time, I wanted to go because I wanted to learn about God! But, I just couldn’t do it. After awhile, I thought I was socially inept….But then, I read the chapter of this book and applied it to areas of my life – took the information for what it was. One day, my husband bought me a Saturday newspaper – he NEVER buys me a Saturday paper…but he did that week. I was thumbing through it and came across the Beliefs section, so I read the article and way at the bottom of the article was a teeny little ad for this writing group…hmmm…right up my ally, I thought!!! So, I e-mailed Sue and, well, that Saturday came and I went – just like that! Not even a second thought, I had no anxiety…no second thought…I had no idea who anybody was there…but I had this peace about going…it was truly amazing and God-lead, I guess is all I can say. I have never felt more welcome by a group of people and I have never been made to feel like I belong like I did when I walked into that room….so now, I am no longer a teenager…I am no longer a young mother…I still take some meds….but I would venture to say, in my opinion, confidence is all in who we are in Christ….and in Him, I have once again found my confidence.

Revelations 21:7 – All who are victorious will inherit all these blessings, and I will be their God, and they will be my children. – (NLT)

John 15:7 - If you remain in me and my words remain in you, ask whatever you wish, and it will be given you. - (NIV)

~ Ode to Sticky Notes ~

For those who know me well - this little diddy will be no surprise to you - as my obsession with sticky notes is practically disturbing - they're in my desk at work, in my desk at home...in my purse, in my planner (which is in my purse), stuck to the side of my fridge, on my night stand, on my end tables....on my kitchen table....and I'm sure there are other places I am forgetting...I love sticky notes!!!

Sticky notes, Oh sticky notes, so many sizes...
Holding my ideas - my notes, my lists, my mind's surprises

Colors and colors my excitement I cannot contain!!
I buy more and more until 50 cents in my wallet is all that remains!

My mirror is full, my desk drawer is too
All of these sticky notes direct me until their tasks I ensue

Sticky notes, Oh sticky notes my love for you, I can hardly express
Sticky notes, Oh sticky notes
Which color will I buy next?? 

The Bolivian Bag of Many Colors

Have you ever found a treasure so beautiful, so appealing to your eye, you couldn’t leave the store without it? I found such a treasure today….I took my bi-weekly trip to the local Goodwill store this fine, Sunday afternoon….Goodwill happens to be a place I find to be a treasure trove, somewhere where the possibilities are endless! Can you imagine some of the stories that the items you find could tell? The places they've been? The people that have purchased them? How they came into existence? I could…ok...I DO spend hours sometimes in that place trolling through each area, looking for that perfect item. One week it’s a purse, the next week a book, a pair of designer shoes…maybe a pair of name-brand blue jeans that are actually long enough for my 34-1/2” inseam. But today….yes, today I found my treasure in the purse section, a place I often find myself. You see, I have an internal map of where I go in this store. I have a routine…and if I don’t follow this routine, I can’t adequately complete my treasure hunt successfully (rule number 153 - never default from routine). So, I find myself sorting through the purses – one can’t just look, one must dig to find the treasure – often times the true gems are hidden far behind the basic browns and boring blacks. The first purse I picked up was…okay by my standards, a decent brand, well made…goldenrod yellow – I don’t have one in that color (those that know me well will be surprised to read that). The zipper was heavy duty, the bag was leather…there were some odd knotty-bow type things on the side – I could get used to it, they were funky…and I like funky. It had a blue tag on it, and as my fellow Goodwill shoppers will know, every week a colored tag is on sale for 50% off….so, alright, I didn’t think the shoulder straps were long enough to accommodate a winter coat, but I liked that the rest of the bag was big enough to lug my enormous amount of, what my husband finds to be, unnecessary junk. I, of course, disagree finding everything in my purse to be absolutely necessary – otherwise it wouldn’t be in there. Anyways, I grab the bag and continue thumbing through the others – I’m not finding much, I have to say I am rather disappointed, as I have been several weeks in a row now. I happen to grab this exotic looking, “Joseph and the Technicolor Dream Coat” looking bag – my first thought was that I would use it for my writing stuff, for the umpteen books I like to carry around…when my purse isn’t big enough and I decide I need to carry a second purse…it was alright – and priced at $3.99, who could go wrong? So, I grab it and still was not overly impressed with the goldenrod leather bag…but, whatever…still not thinking much of it. By this time, my husband decides to make an excuse to run back home and leave me there for awhile to continue my searching – making me promise that when he gets back I’ll be ready to go. “Yeah, sure…okay” I say, without even looking up. He knows better than to think I’ll be ready when he gets back….well, at least I don’t have to worry about him hounding me every 2 minutes about whether or not I’m ready to go yet. I move on to the shoes, as is my usual route – and again, I am in grave disappointment at the size 10 selection of footwear…really people? Either all women with size 10 feet hoard their shoes, or we have a serious shortage of fashionable kicks for the women that don’t wear a size 7. Severely disgusted and cursing the footwear industry under my breath, I mosey on over to the books and find a couple that I’ve been looking for and by this time, the hubby is back….didn’t seem like it took him long enough – I hadn’t even made it to the clothes yet! Oh well, my time is up – I suppose it really is ultimately my fault anyways for inviting him along in the first place, but it’s keeping my wallet a little bigger this week at least. We check out our items, and to my dismay, the goldenrod bag is NOT half off as I thought it was….so, my decision has been made, I am not going to buy the bag that I am on the fence about. Sure, the color is not yet in my collection, and the bag is of sound structure…but, I’m afraid I must say to this bag “I’m just not that in to you” and leave it behind for a woman who will love it for sure. I did, however, purchase my ‘Joseph bag of many colors’….and when I got it home and took a closer look – I am so pleased I did! It is the purchase of the month for sure! First of all, this unique bag is made in none other than Bolivia, the colors are amazing – there are pockets EVERYWHERE – and not just pockets, deep pockets…two water bottle holders on either side….I can jam all of my – very necessary – junk in the thing and still carry books and writing materials….it’s an amazing bag and at $3.99, it is a treasure find for sure. Whoever tossed this in their Goodwill donation bag, I can assure you, I will love it and use it and give it a good home for a long, long time…!

So I give a big thumbs up to the Bolivian Bag of Many Colors - as I have affectionately named it....confession: all of my bags have names.....as you have read in my "What Inspires Me" post, I am a self-professed (and proud of it) geek....I prove it yet again....

Pulled from the Ashes

First - I'd like to explain that this poem was inspired by the poem written by Russell Kelfer in the book "The Purpose Driven Life" - particularly the stanza reading "No, that trauma you faced was not easy, And God wept that it hurt you so, But it was allowed to shape your heart, So that into his likeness you'd grow." I would highly recommend this book and especially this poem....in many ways, it changed my life...

 You pulled me from the ashes, Lord
You took away my sin
You watch over me day and night
Though I don't deserve to be your kin

I am but a child, Lord
But I'm learning by the day
I was crushed and thought you hurt me, Lord
But really - you take my pain away

I cried out to you to save me, Lord
But you cried with me and were also hurt
I thought I hated you my dear Lord
I thought you didn't care
But then I realized something, Lord
It was for this, the cross Jesus did bear

And I prayed that you'd forgive me, Lord
But I know now in my heart
That by the blood of Christ you have saved me, Lord
I am able to have a fresh start

The enemy brought me down, oh Lord
And took away so much
But I know that you will bless me, Lord
Every day I feel your loving touch


Forgive me, my dear Lord
For the sins I have committed
For in my deepest heart of hearts
Again, I have submitted


Your love for me flows endless, Lord
And now I finally get it
Hold me close, my dear Lord
And never let me go
For one day I want to live with you, Lord
Your seeds I want to sow

Mr. Coffee

The taste of coffee in the morning is like a sweet harmony of awakening to a sense of calm and warm affection. The early morning - long before the sun rises - when my mind jerks my body awake is the perfect time to sit at the kitchen table and sip that warm brew from the red machine affectionately named Mr. Coffee. I diligently read my morning devotions and spend time in The Word as my body follows my mind's awakening. While the sun rises, Mr. Coffee brews me a second pot of his yummy blend......and my day is ready to begin.

What Inspires Me?

 

I am inspired by the quiet and an empty page awaiting great ideas be spilled from my finger tips. The inner dialogue in my head never seems to cease, one can guess how many great works have gone to waste because a pen and pad or laptop have been nowhere to be found at a time when my mind could not stop it’s flow. The itch catches me at odd times, while at work when I should be concentrating on scheduling shipments and grabbing due dates for customers or while I’m grocery shopping and should be concentrating on which coupon I clipped for the product I’m holding in my hand – or perhaps when I’m trying desperately to fall asleep because my body can no longer hold on but my mind won’t keep quiet. These are the times when so many good works go to waste, I promise myself I will remember to “write that down”, in the words of Van Wilder – but can never get it right when the pen and pad are available or the curser  blinks before me.

This inner dialogue, for as long as I can remember has haunted me. I have often seen my life in the form of the written word – should that make any sense to anybody that does not understand the art of writing, I would find myself surprised. Should this make sense to anybody at all, perhaps I would find myself even more surprised. It has been a great comfort to me during the trials of my life because in writing, there is a beginning, a middle, and an end – there is a plot and if I am the writer, I can control those outcomes. It brought me comfort knowing this and having this control during the times when my life felt out of control. I scribbled poetry, short story and journaled incessantly. I took every English class available to me in high school and found myself gravely disappointed to find that I tested out of every English and literature class offered at the UW extension in Sheboygan. I was lost without it, what could I do with this craving I had for more?

Other inspirations came to me throughout the years as I was told by friends along the way that my storytelling was fun to listen to, that my writing was fun and comical to read. That the stories I told of my life and various situations I found myself in were brought alive by the words I used. This brought confidence to me and lit the fire once again for me to do more than just journal. The poetry I once wrote seems to have lost it’s zeal in my life, as it spilled from my pen when I was angry and hurting. Yes, some were of silly, teenage love – but mostly my poetry is angry and depressing, reeking of a little girl who was hurting and calling for somebody – or nobody – to help. Therefore, I feel that poetry has served its purpose in my life. Short story – yes, I could do short story, though my short story perhaps would be closer to memoir I believe, as I would much rather write of experience than of fiction. I have always been inspired by self-help – I always thought one would have to have extensive degrees…letters after one’s name, if you will, to write a purposeful, successful self-help book and should that be the case – my book might be called “Scheduling: How to Give Your Customer a Due Date with Purpose” by Dana Bastian P.S.A.A./P.A.E (Production Scheduler, Accounting Associate/Phone Answerer Extraordinaire – I don’t so much like the title “receptionist” – answering the phone is just a bonus part of my job – one I find myself less than thrilled about).

I would also love to find myself being a freelance writer voicing my opinions about items of interest to me. I think it would be great to be a columnist – I picture myself in a couple of different situations…first, perhaps I should add that I once had my high school band instructor call me scatter-brained. Others may have been offended by this; however, I chuckled and agreed – I was, quite possibly, still am at times. I carry a planner and write everything in it – I have a freaky obsession with office supplies and an even more disturbing obsession with sticky notes – and if you ask me to say the word sticky notes – you probably would look at me and think I was absurdly weird. I’ve been like this for as long as I can remember – when we went shopping for school supplies as a kid, this was the best day of the summer for me – I organized, re-organized and organized again my school supplies that smelled fantastic and brand new. Freshly sharpened pencils – there isn’t anything better. Anyways – herein lies my point of my scattered brain, I am very off track in what I was beginning with…offended was the very last feeling I had by this remark because, quite simply and without being haughty, my band instructor knew without a doubt that I had my part down and I really did not need to be at that practice. We were rehearsing for the solo ensemble competitions and this was our clarinet group (ah yes, I was a clarinetist). I played first part – I sat first chair through high school. My part was down pat. I spent every waking moment in the band room – I skipped gym class to be there…I still got a B in gym class – I have no idea how I pulled that off, I never made one class. Regardless, scatter brained as I was – I still am…and as you can tell, I am completely off point. I will try yet again to explain where I would see myself as a free-lance writer…I see myself at times, sitting at my desk at home, drinking too much coffee so that my caffeine buzz makes me type like  a fiend – faster than I type already – I’m in my red fuzzy slippers and my favorite sweat pants. I have peace and quiet because my husband is at work – he is awful at occupying himself…and always has to have the TV on, even when he’s not watching…I write all day and I have my sticky notes stuck all over the place with my ideas, I have pencils holding my hair back in case I need them – in good scatter-brained, geeky fashion, of course (I’m a self-proclaimed geek, have I mentioned that as well?) Although, going back to high school, it wasn’t so self-proclaimed….and it did a lot of damage to my adolescent self-esteem – though now, as a 29 year-old woman – I do feel quite proud of my geeky-ness. The second setting I see myself in, also includes too many sticky notes, a desk, a laptop and pencils in my hair…however, I’m in a cubicle (would love an office, but I can’t aim too high too quickly) – I’m surrounded by other cubicles, so much quiet it’s almost eerie and the faint sound of many keyboards clicking out fantastic pieces of the written word – masterpieces that will surely be published…in something – a magazine, a newspaper – it’s anybody’s guess!! Of course, much coffee is consumed, though the fuzzy red slippers must be kept at home.

I am finding myself all too consumed by this writing – I was a tad bewildered and I must admit intimidated by the blank screen with the very black, very angry looking curser blinking back at me…teasing me – daring me to write something great. Great, I cannot promise….perfect English, most certainly not…..a feeling of release to finally allow my inner dialogue a place to reside….this is a definite yes.