When things don't go as you planned...

I thought I'd share a little(ha) about something personal.  Most, if not all of y'all know about my second son who is disabled.  We don't talk about it much, not because we're ashamed, but that it's 'normal' for us.

He was born 26 years ago next month.  Although the only problems I had in pregnancy was eating, I couldn't keep much down and going into labor early the Drs. stopped it, and falling flat on my belly at about 6 months, it was fairly uneventful.  What falling taught me is that baby is REALLY protected.  Being a little over 21 at that time, that wasn't something I was that sure of.  Needless to say, with being 6 months pregnant and also having a 14 month old at that time, there wasn't a lot of time to ponder on things.  The pregnancy went fairly smooth after that.

We were blessed to have my Dad there at night, he went home on the weekends.  He was working a job in San Antonio at the time, and it was easier for all of us for him to stay.  It's funny that I don't have a lot of picture memories of him there (probably because he went to bed as soon as he ate) but I do have memories of his presence there.  It was comforting.  Plus, I'm sure Steve enjoyed someone else in the house that wasn't hormonal all the time.

So, the day came when I went into labor.  I honestly don't remember much about it, except being in the labor suite at Fort Sam.  I wasn't there long before I felt the urge to push.  Which, for this day and age isn't a big deal, then, at a Military Hospital, it was!  See, you labored in a Labor Suite, you were rolled on a bed from there, scootched over from the Labor Bed to a Delivery Bed in the Delivery Room.  You had the baby, scootched onto a Recovery Bed were wheeled into Recovery.. In Recovery you 'did your business' to make sure the plumbing worked and were wheeled (scootching ended with the Recovery Room) into your room which, unless you had a semi-private room, you shared with about 7 other new moms.  It was an interesting experience.  Totally worth the $14.36 the entire delivery/stay cost.  (Our oldest was a dollar less)  But, I digress; which will happen more times than not with me, so bare with me, please.  I felt the urge to push and could feel Kyle was ready to enter the world, even if we weren't ready for him (story of his life), which the Dr. tells me 'can't be', famous last word in a delivery setting.  Fast forward to utter panic of the three Stoo..people trying to wheel my bed across the hall, bumping into to every protruding object on the way there.  Someone finally says, 'Wait, the brake is on!'.  REALLY??!!  So, we get across the hall, I switch beds, I won't get descriptive here, it wasn't pretty.  The Dr. is there, as is Kyle.  Not lights, gloves going on JUST in time to 'catch' this slippery dude.  This tiny little Dr. (oh, and the 15 other people in the delivery-room with us) is on the bed 'just barely' catching this child as he 'explodes' onto the scene.  There is such a term, and that's what Kyle's delivery was termed..Explosive Delivery... another part of the story of his life!  

A sweet segment of this time was when Kyle met his oldest brother, Jason, in person.  See, they had communicated through, what Jason termed as the 'phone' to his brother.  I'm not tall, my belly was HUGE and Jason was 17 months old when Kyle was born.  All this adds up to the ability for Jason to 'talk' to his brother through...my bellybutton.  Which he did quite often.  It lays way to totally agreeing that an unborn child CAN hear in utero.  Kyle was about 2 hours old when Jason and Steve were coming down the hall.  I was sitting in a chair, a nurse was with me for some reason.  Kyle's face was the opposite direction of the hall.  All of the sudden this newborn baby quickly turns his head and most of his upper body to a 45 degree angle to his brothers voice!  The nurse was totally shocked.  'I have NEVER seen a newborn do that!'  The brotherly bond is still strong as steel today, almost 26 years later.

By this point you must be wondering, 'how in the WORLD does all this relate to the title of this blog?'  Heck, I would be.  It wasn't until school that I began to understand, Kyle just want' a 'full of energy, always, CONSTANTLY talking, on the go...did I say FULL of energy...kid'  I was always told I was 'full of energy, enough for 3 or 4 kids in one kid'.  So I figured it was genetic.  But when it came to learning, there were problems.  That was the beginning of 'the rough waters' for Kyle, and us.

Kindergarten, Kyle struggled.  I didn't think too much of it, I just figured he needed a LONG adjustment period to school.  I remembered starting school, it wasn't my favorite thing.  It took time away from PLAYING!  You had to SIT, STILL, in ONE PLACE and do NOTHING for FOREVER!!  AAGGGHHH!!!  My poor teachers, was my thought as I thought that thought for Kyle's teachers.

On to First Grade.  That summer, I prayed for Kyle's teacher!  A LOT!!  I prayed that she'd be Graceful, Merciful and have the patience of Job!!  She was PERFECT!  The first half of the year was rocky, but I figured things were looking up.  Then came the call that was the beginning of a journey that totally changed our lives from that point forward.  Here's where 'my plans' for what I thought Kyle's life would be changed.  I really didn't realize it at the time, but they did.  He'd been doing fairly well in most areas.  Then came (I'm hearing the DUH DUH DUUUHHH suspense sound)... The Spelling Test.  It's a landmark for Kyle.  It doesn't seem like a simple Spelling Test could change someone's life, but it did.  See, the teacher had left out the sixth spelling word.  She usually recited the list exactly as it was in the book.  She realized it a couple of words down, fixed her mistake and went on with the list.  When grading, she realized that Kyle had gotten every word exactly right, until the sixth word.  She waited until the next spelling test, mixed up the words, and Kyle failed the tests.  Both the spelling test and her test.  She took time to figure out, Kyle had been not only memorizing the the words, but he had a photographic memory.  One of her 'tests' was to give Kyle an oral spelling test.  He could spell very few of the words.  While on the written, he got more right than on the oral.  This was about Spring Break time.  This wonderful young woman, took her entire Spring Break (she was dating a young man who she ended up marrying at a later date) to make Kyle his personal Lesson Plan!!  Did I mention this was her first year teaching?

Fast forward to the Fall of the next year.  Kyle repeated the First Grade.  It was with a different teacher.  Since I was taught to not say anything if you can't say something nice, I won't mention this teacher, except to say this.  I think she realized at one point that she was dealing with a child with a malady of issues.  Many of which were NEVER, in the entire 13 years of his schooling, were ever figured out.  It was also the year Lauren was born.  I do remember a conversation with this particular teacher that did not go well, AT ALL!  I ended up sobbing because I didn't understand why someone chose to teach, if they weren't prepared to teach all children.  Even children with severe learning disabilities.  Yes, she had a large class, yes, Kyle was difficult to 'handle' but he still had the LEGAL right to THE BEST education that could be taught to him.  That was not happening at that point.  So, not being one to just sit on the sidelines and watch someone give up on my child,  I researched.  I got in touch with an Educational Lawyer.  Who asked a lot of questions, told me to get a piece of paper and take copious notes.  I did.  The school was telling me it would take 6 - 8 weeks to test Kyle, which meant that it would be the following year before he even began to get the help he needed.  Not soon enough as far as I was concerned.  Long story short...schools do not like Educational Court.  Which is what the Educational Lawyer told me would happen because we had about 7 counts that we could take to Court.  Don't get me wrong, I am not bashing schools.  I do know, that at that time, for my son, they weren't up to par...for me anyway.  Some may wonder why I didn't home school.  The thought crossed my mind, MANY times.  BUT, I also knew that my son needed someone that had taken Special Ed classes to teach my son.  Which is where my son spent the remainder of his schooling.  I still don't feel that he was taught as he should have been.  But, at the same time, I ask myself if I did enough for him.  Do I take partial blame?  The answer to the former is no...which makes the answer to the latter...yes.   

So, we're at the manifestation of Kyle's 'illness'.  The teenage years.  I'm sure many would say teenage years ARE an illness.  I'd agree, to an extent.  I won't go into deep detail, but I will tell you that when you watch your child physically and emotionally change before your eyes and not remember it, they're ill.  This begins the 5 years of 'Hell on Earth' for our family.  It's what the Mental Health arena calls 'manifestation'.  There's got to be a different word, that gives people a better 'visual' picture of it.  There isn't.  Dictionary.com has 5 definitions for manifestation.  None of them are accurate, not even close.  What do you call something that make you ask yourself 'where did my son go?  Who is this??  His body is the same, he isn't!'  I'm sure many parent, every parent asks that.  I SAW it, many times.  Something was taking my child and there wasn't ANYTHING I could do about it!

Net step...getting 'help'.  In order to get help, you have to have a diagnosis.  We'd been to 5 different doctors and although he 'tested' to the point that he 'has' mental illness, there wasn't one that could characterize his actions into one illness.  REALLY????  So what were we supposed to do!! 

I wasn't sleeping at night.  I was listening.  I was listening for Kyle's snoring, for him flipping around in his bed, for him getting up to go to the bathroom.  ANYTHING that meant he was alive!!  I did that for about 4 years.

FINALLY, after about 4  years of praying we did get a doctor that gave a diagnosis.  Again, I don't want to make this about an illness, but about accessing, adapting, and adjusting.  Which is, I guess what this whole blog is about.

The fist step was getting him on his meds.  That meant admitting him into a Mental Hospital.  He went for about 4 days.  It was hard, but at the same time, taught him that was a place he NEVER wanted to go back to!  The meds he takes are fairly strong and we don't know how his organs will do in the long run.  Right now, life is 'livable'.  Notice I didn't say 'normal', I've NEVER had a 'normal' life.  At his point, I think I'd be bored with Normal!

Where are we today?  We're at the ten year mark.  Ten years of Doctors, meds, Counselors, Med Checks, Life Coaches, Work Coaches, agendas in college for LD, C-Pap machine, weight gain....sounds like a long list of things that bog one down.  I don't see them that way.  I see them as a life...a life that, statistically, should have ended ten years ago.  A life that the closer it gets to 35, the great the Blessings from God!  Why 35?  35 is the age in which, statistically, most people with Kyle's illness are tired...they're done.  Statistics, to me, are to be fought, surpassed, blow out of the water!  As far as questioning, 'Why??  What happened??  Who's to blame??"  My answer is this, Kyle is who God 'designed' him to be.  I. Kyle's mom, am the woman God 'gifted' Kyle to!  This person, Kyle, was gifted to me, as he is, because God decided that was how I was to be...Kyle's mom.  So we're back at, where I frequently find myself, Accessing, Adapting and Adjusting...                       

 

A quote that really fits here...

Glance back for a moment and you'll clearly see that life is always what you choose to make it, no matter what else migt be going on.  Now look forward with a rennewed determination and make the choice to live with more meaning and richness than ever before...As this New Year begins, look forward to the opportunity you now have of experiencing life at a new and more fullfilling level.  On this very first day of the new year, look forward to being the best you've ever been at being you.

                                                                                            Ralph Marston

The beginning or Perspectives...

I've thought for a while that it would be helpful, for me obviously, and others, too if there was a place to share perspectives on different things.  Not to argue or debate belief systems, but to learn from each other and support where we are in this journey of life.  "Here's where I'm at...what I'm going through", in order to support each other.  Share what we're going through and maybe for the first time, understand and know we're not alone.  Here's what works for one person, another and another, then we take it and make it our own. 

I figure this is where a blog starts.  Maybe it'll change, maybe it won't.  Hopefully, at least maybe for one person; hopefully for a lot of us, it'll help not to feel so alone in what can sometimes feel like a lonely and expanse world...