Redefining Perfect

The things we take for granted in our lives is amazing.   We forget to stop and see the small miracles that occur every day, we just look for the big ones.  I’m guilty of that when it comes to Riley.  I thought she would grow and advance just like every other child.  I didn’t want for her to have the problems I had to go through.   

We went to the geneticist for over a year before we got a diagnosis. He wanted to observe her and watch how she grew before he said anything definitive. 

After so many visits he was finally ready to tell us.  The diagnosis was autism, specifically pervasive developmental disorder (PDD-NOS).  My wife and I were stunned.  It didn’t change how much we loved her, looked at her, or treated her - but I felt responsible.  I was the one with all the problems growing up, and the lingering ones as an adult.  My wife had a typical childhood, no major problems to speak of. Her first child was neurotypical.  No, if Riley was ill, it was because of me and my blasted genetics.

Riley was still not talking, or smiling much.  But she was playing “outside” of herself.  Any situation where a lot of people were involved made her extremely uncomfortable, often resulting in a “meltdown” as we called them.  She did not like for anyone to initiate touching or hold her unless it was herself.  We saw a little girl locked inside herself, and we had to find the keys. 

As Molly grew, we were enrolled in an assistance program that helped us find and meet her special needs.  She met with various therapists each week to help her reach goals that were set forth to bring her development up to speed.  She also was able to attend a special needs pre-pre-school , which she started out very withdrawn, but ended up comfortable and playing/learning/chatting with the other kids and teachers.  My Riley was coming around, and I couldn’t have been prouder.

Riley began to talk, she had been saying some words, but now she was really talking.  It was very difficult to understand her sometimes, at least for me.  My wife spent all day with her and it was easier for her to pick up Riley’s speech.  But she was improving.  Her weight was always on the low side, but her height was average to tall.  Her was growing, and it was long platinum blonde with curls at the end.  Her hair was very fine, but it was healthy.  Her appetite was increasing, but there were certain things she would not touch, probably due to texture or feel.  She would give quick hugs, and sometimes we could kiss her.  She was improving all the time, making big and small leaps in progress.

Today Riley is a little personality.  She is still withdrawn and still has her “quirks” – but daily she reminds us of how far she’s come – and how much farther she is destined to go. I still struggle with what I’ve done right, or wrong – and with my own self-blame…but nothing cheers me like a hug and a kiss from my own mini-me. My Alligator. My Riley.

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I apologize for the delay in the latest installment from Archie!!  I kept forgetting to edit it.  This was the final installment in the ‘Real Men Don’t Cry’ Portion.  I’m hoping to keep nudging the hubs to make posts on a variety of subjects – because I know he has a lot more to say!  So Fatherhood Fridays are far from over!!

Time marches on, life moves forward and things change.

My first REAL job was here, at this Hardees.  Yes, this exact one.  I worked there with several of my friends off and on throughout high school.

Tonight I drove past and all that is left is rubble.  They’re rebuilding, putting in another Hardee’s – but it will never be MY Hardee’s.

The Hardee’s where Jeffy almost broke my nose one night when I was NOT actually employed there but helping them close up.

The Hardee’s where we spent hours chatting in the parking lot while I gave, and got, back rubs…and braided the boys’ (yes, boys’) hair.

The Hardee’s that I worked at and got so much grease embedded into my hair JUST by working there, that it took 3 months after I left for good for my hair to ACTUALLY become clean.

The booth that was OUR booth.  We ate there, talked there, I even had my interview there. 

The booth that I sat in and laughed my BUTT off because for the first time in my life I’d seen someone literally GRAY in the face!! Kel-Kel…I swear I will NEVER forget that New Years party…and I wasn’t even there.

Our manager, Dave…who I still see and looks like a crazy mountain man now…but was a cool manager.

The tons and tons of free chicken I took home because it was leftover.  That my family pigged out on at every sinle party we had…and it was GOOD.

The endless amounts of 1/4-cheese ketchup&mustard only w/ fries that I ate…I still dream about the damn fries.

And last but not least…that monster under the CIRO-D.  It haunted us for years…and even after the remodel that monster was there…hiding in the fat vats.  We all knew it…but the destruction of the building has taken that all away…

Hardee’s – I hated you, but I loved you.  We had some hilarious times there…especially when the closing team was a group of band geeks.  I’ll miss you as I knew you…filthy and disgusting as you were.

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And no, I can’t believe that I just waxed nostalgic over Hardee’s…but it really made me sad.  The building NEEDED to be demolished…but I’ll still always remember it fondly as my first place of employment…where I worked with a lot of my friends and I continued to hangout and ‘work’ at after I STOPPED collectin paychecks.

I spent the better part of the weekend (from Thursday to Sunday) sleeping.  I was sick, sick, sick…and have just now started feeling better.  The worst part of being sick was having two sickies with me (*thing 1 and thing 2*) that were just as miserable as I was. 

Riley recovered fast, but it clung to my Angel like  glue. The cough lingered and she was put on antibiotics (drugs…woohoo).  She recovered a bit, but continued to cough.  And cough. And cough – waking up at nights.  It wasn’t continuous – just lingering. So, as luck would have it we had our regularly scheduled visit to the CF clinic yesterday. Her lung functions have gone down, so the pulm has extended and increased her antibiotics….and added steroids. 

So after all of this, I’m finally back.  Still keeping an eye on my baby – but I’m here!  Sorry I was so MIA.  Whateer this summer cold was made of, it kicked my ass!

And the Rock and Roll?

Well, it’s RIGHT HERE!!

See Part 1 by clicking HERE

I never knew or met anyone who looked like me.  Someone who shared certain traits.  The connection was so amazing.  I could look into her eyes and see myself, no longer alone.  She was very special to me, in a way that most people would find hard to understand.  I found redemption for past failures and a bright future was suddenly ahead of me.

Around 3-4 months old, Riley started crying after she ate.  At first, we just thought it was indigestion, it would pass.  But it didn’t.  The crying soon turned into screaming, her muscles were tensed, and she was unable to be soothed.

A trip to the doctor soon turned into multiple trips, with fluoroscopes, tests, poking and prodding at my/our little girl.  We were told that it was a simple diagnosis, silent acid reflux and it could be corrected easily with medication and close monitoring.  That was okay, but she suffered for around three months in terrible pain and anguish, unable eat without it hurting her. 

As she was getting better and able to eat without painful consequences, I started to notice that she was just not….right.  She was now very quiet, withdrawn, never smiled, and physically she was wasted.  Her doctor appointments were indicating no weight or height gains, even having lost weight at times.  Her hair was lifeless and dull, eyes were glassy most of the time, and her only method of communication was crying in distress.  She was drawing herself into a shell that neither my wife nor I could penetrate.

All of this time I was in complete panic mode.  I finally had what I had been needing all of my life and she was slowly, painfully wasting away.  Babies are supposed to be chubby and full, but she was bones and flesh.  My wife and I supported each other as best we could, but I anguished terribly inside.  I wondered if I didn’t get help for her soon enough, or if I failed to see the signs and in turn failed her. 

I can’t explain how it feels to be so alone in the world, not really connected to anything.  How many people take for granted that they have mother’s eyes, their fathers’ hands, that little half smile that started at the corner of their mouth just like their grandfathers in their youth.  I had none of those things until Riley was born.  Now I was in danger of losing that.  Many sleepless nights, staring at the wall.  What was to become of her, and me?

I know how selfish it sounds that my happiness was linked to hers, but that’s the way it was.  For a while, we didn’t really know for sure that she was gonna make it.  We met with other doctors, and then a geneticist.  The geneticist was really able to help us with our fears and concerns.  We didn’t like all of the answers, but he was honest and straightforward. 

We bulked up her milk rations and worked constantly to improve her state of mind.  One of her issues was revealed to be an oral aversion.  She didn’t want food, she wouldn’t talk, and she would not let anyone look at her teeth which by this time were causing her some discomfort as they do all babies.  But she never showed us or told us if something hurt, if she was happy, if she didn’t like something, nada.  Zip.  Nothing.  The scariest for me part was not knowing if she was really in there or if she was gone forever.  She looked like a little zombie most days.  My heart ached and weighed three tons.

After several months, the added nutrients began to work, her hair started growing again, and had shine & luster to it.  Her little body started to fill in just a bit, she would still be a skinny child given her parents, but we were okay with that.  Anything but the bones that cast shadows.  She was still withdrawn most of the time, but we began to see signs of life.  She began to show interest in things outside of herself. 

She could complete ten of the wooden type puzzles with letters, numbers, and shapes, at one time. 

Amazing. 

She didn’t so much play with her toys as she did organize them with razor sharp straightness.  She walked at just under a year, which we felt was pretty good considering her delays.  She walked on her tiptoes a lot, my wife thought she would become a dancer.  She became frightened at loud sounds like motorcycles, hot rod cars, loud bangs or crashes, and would often cover her ears.  She did like for the tv to be louder, so it basically drowned out other noise.  It was difficult to get her attention; sometimes it seemed as if she were somewhere else.  But we were slowly getting her back.  I thanked whatever higher power that heard our pleas.  I also began to relax, uncoil, and enjoy her.

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I am very grateful today is Fatherhood Friday and that Archie had stepped up with a post because I’m sick as a dog, and so are the girls.  I will try to be back tomorrow – if not in time for my Weekly Winners – but there are no guarantees.  I feel like death, just ask Archie.

We are a full sick house today.  It started last week with me having an upper respiratory infection.  Just as I got better, Riley got the sniffles.  Then yesterday I got them again.  Runny nose, head congestion, a full blown head cold.

Today the part I always always fear happened.

Angel was congested when waking up.  And unlike Riley and I – she was coughing. 

We have been blessed (and damn lucky) that Angel has not yet suffered any serious illnesses since her CF diagnosis 2 years ago.  That doesn’t stop the fear that grips you with every illness. 

How fast this cold hit, the fact that she has a fever and is coughing worries me more than my own illness or Riley’s.  She was fine when she went to bed last night, and this morning is not the same.  Lethargy, grumpiness and a need to be on my lap all the time…it’s all causing me to worry before I should worry.

Once I knew there was a fever I did what I was supposed to.  I’ve called the pulmonologist and spoken to a nurse.  I’ve put her in her chest compression vest and done a run on the nebulizer.  I’m waiting for word back from the doctor now.

I’m terrified of the Big One.  The first time we end up so sick and in the hospital, her little lungs fighting harder than any of us to get rid of something.  Every sniffle brings it back up, every cough tugs at my heart. 

So in the mean time I’m in the steam room (the bathroom) trying to declog my own sinuses and the girls…because I’d like to be able to care for my baby without my own pain getting in the way.

I took this picture yesterday and it was just too perfect not to post.  I’m simply calling it “Blue”.

Weekly Winners is the brainchild of the wonderfully Sarcastic Mom, Lotus

All photos were taken with my Canon Rebel XTi. No editing on any of them except for size.

This week was filled with visits with family, sewing for Christmas presents, storms, and a “snake bite”. Pictures in order:
1. 3 cousins all w/in 2 years of each other. It was “Serious” business, donch know?
2. The girls climbed up onto Papa’s lap of their own free will for a story – first time it’s ever happened!
3-6. Sewing projects. My fav shots of the week.
7-8. Bad storms on Tuesday. These pics are two fronts colliding to bring the second wave of massive storms.
9. My “snake bite”. Was playing with the dog and got my arm caught in the choke collar. It hurts like hell, and Archie and the girls decided it looked like a snake bite!

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 No, really, they don’t.  I don’t personally know any real men, but, I digress.

This is the story of how I found myself – finally - at the birth of my oldest daughter. 

My early life was fraught with failures and disappointments.  I never gained self esteem. As early as 1^st grade I have memories of not liking myself, although I have a feeling that it was always there.  I suffered from crushing depressive episodes and anxiety coupled with OCD tendencies (read: anal-retentive).  I was an adopted child and although my family was always loving and caring, I felt empty, like something was missing. 

And it hurt. 

People mostly stayed away from me, I think they saw the storm clouds over my head.  As a teen and a young adult, well….less said about that, the better.  I discovered the joys of alcohol during these years, and to say I even wouldn’t like myself is redundant because we’ve already established my self image/esteem problems.

I tried a lot of different things to fill the void, but nothing worked.  Broken relationships and marriages, ruining friendships, alienating family, etc.  I was always hopeful in the back of mind that I could find peace someday, even though externally I wasn’t positive about it.

Cut to 2004.  My marriage was doing well, we had our bumps but who doesn’t?  We had halfheartedly tried to have a child, but nothing happened.  We were content with our small family.  I might have been a bit uneasy, but I was learning to live with certain things.  In September of that year, my wife had not been feeling….right.  She tried a pregnancy test on a whim.  Surprisingly, it came up positive.  We were going to have a baby!

I felt that I was ready, but still nervous.  My mind raced with the thought of being a father..

Was I ready? Would my child like me? Who would they look like? How am I gonna afford to pay for this? It was a long wait for the baby to arrive.

I was in for the whole delivery scenario, but it made me extremely anxious.  Finally, the baby came.  After  the nurses cleaned her up a bit, I got to hold her.  She was tiny.  She was red and wrinkly.  She was crying non-stop.  She was beautiful.  I thought it warm in the room and I was sweating.  I wasn’t sweating, I was crying.

My wife and I had gone through the whole name thing, and we wanted something that fit with our last name, flow so to speak.  I came up with the one that stuck, and it felt right.  She was my pride and joy, and I had never been happier in my whole life.  Finally, someone who shared flesh and blood with me.  I was still uncertain at times, but it was becoming easier for me to be natural instead of forced.  She slept either in the crook of my arm, or on my chest.  I got her first smiles.  I gradually began to realize that my emptiness was slipping away, replaced by the sweet little girl that actually was starting to resemble me. 

Life was never better.

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Archie is my husband, father to my children, and as you can see a very caring one at that.  He’ll be making a few guests posts – and this is just the first in the series.  He’ll talk more about the “first blood relation” feeling, what it was like for him as we gradually realized something wasn’t ‘right’ with our baby girl.  All from his point of view.  You’ve heard mine often, I thought it would be nice to hear his as well.  The posts will be probably once a week – so long as he keep them coming and you show him some love…so please comment for Archie – he’d love to hear your thoughts – and it will help bring him back!!

You thought you’d get a post from Mr. Perfect today, didn’t you?  Well, you aren’t that lucky…he’s still writing.  So instead you get the fun random bullets…

* I’ve been sick the past few days.  I feel ‘okay’ in the morning and it starts to hit by about 1 every day.  Headache, sore throat, muscle aches, grumpiness, and feeling clammy-like.  After two nights of putting up with me, Archie wants me to call the doctor. I did and go in today. I’m sure I’ll be told it’s just a cold, but it’s just as well to go in w/ the sore throat and a CF babe in the house.

* Remember the Saga of the Big Toe that started in January and I thought was done in April with a big fat cortizone shot?  Well, it’s not.  After enough distractions and pain killers (thank you, gall bladder), I was able to ignore it for 3 months – but the pain is not gone.  It gets worse when I wear my sneakers for more than an hour or two.  So, I go back to the podiatrist next week.  It’s a good thing I like that man with how much I despise feet….

* Today I finally got off my butt and scheduled doctor’s appointments I was supposed to a couple of months ago.  My podiatrist for one, I called the OBGYN for my 2 year check (hooray for no parts, checks get farther apart) – only to find out I’d already scheduled it months ago…and I got Riley’s appt with her geneticist set again. 

* I’ve been sewing like mad – well, previous to my sickliness.  Trying to get Christmas presents done for the girls.  It involves working my poor sewing machine to the bone, but will be worth it…if I can restrain myself from putting the clothes on the girls prior to Christmas.

* Brandon starts 6th grade on Tuesday.  Tuesday!  I can’t believe summer is over already…but I’m relieved in a way.  We seriously need the break from each other.

* The girls old OT called today just to see how they were doing.  I thought that was so sweet of her.  It was good to talk to her again briefly.

* Had one of my ex’s actually act surprised and hurt that I ignored his friend request on Facebook.  He sent me a message asking if I still hated him that much that I wouldn’t friend him.  I didn’t bother replying – but have to say that I don’t hate him…hate is such a strong word..but really, I don’t LIKE him enough to friend him…anywhere. 

* July was a great month of visiting family…and I’m sad I wasn’t able to get to Buffalo to do the same.  Hopefully next year I will get there.

* Still wishing I could make it to Type A Mom.  No sign of sponsorship in sight, though…so that may be another I miss again.  Maybe next year.

* Have an editor actually reading my novel now.  Here’s to hoping she loves it and you’ll be looking at the latest published blogger here soon  

That’s it for now.  Hopefully soon hubs will finish his blog post for me…and yes, I’m putting this out here to help nudge him toward it

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Time means nothing.

Time means everything.

Years go by.

Days.

Minutes.

And it’s like nothing…and everything has happened.

There is never enough time together…

And always too much apart.

But when apart, and then rejoined, familiar words, jokes, thoughts, feelings…the heart beat of home remains the same.

Nothing changes.

Everything changes.

Family is constant.

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In the next day or two, expect my wonderful husband Archie to guest post.  I have asked him to contribute on how it is for him raising our special girls.  He has agreed to give it a shot!!