Mid Winter Break

Okay, what's the deal with this Mid-Winter Break stuff? We never had this back in the day. We had Christmas and Easter break, then Summer. With a few holidays sprinkled in. No wonder America's doing so horribly academically. The kids are never in school.

Boy I'll tell you, a week at home with your two and a half special kids (Kobi is only about 1/2 "special" ) during freezing cold weather will definitely bring out Ms. Crabby Mom. At least it did in me.

Whoa.

I don't think they got to stay up late one night. The three of them make a potent recipe for mommie madness. Kameron and Klaryssia are both crazy stubborn, then throw in Kobi, my Drama King, and I'm frankly amazed we all survived the week.

Bickering (of the "she's looking at me" sort), mixed with boy-type exploits and my attempts to keep on top of work and school assignments (while feeding and caring for their needs) made for some interesting times. One afternoon, the Kameron managed to squeeze the filling out of a special gel-filled pillow left over from the last hospital stay. This was when the boys were playing in their room with the door closed. Closed doors are always a recipe for disaster, I think. Kobi decided to clean up the white foamy mess, and so water was added to this stuff.

It turns greasy with water.

By the time they came to get me to fix things, the white grease mess was everywhere. On both beds, in hair, on clothes, on the wall, all over the wood floor...you get the picture.

It took awhile to figure out how to get it off. BTW, in case this ever happens to you, the Swiffer wood floor mix doesn't do it; the Swiffer all-purpose floor cleaner, judiciously applied and dried with a towel afterwards, does.

Kobi did the drying.

I can't remember which day this was; they've all run together like a watercolor painting left in the rain...but today everyone's back to school. I'm hopeful I'll get some good work done.

I need to build up a backlog before Spring Break.

Big Dreams

I have big dreams for my little family. My older group - Kris, Kelsey, Elesha, and Kaleb - are all out of the house and pretty well on their ways. But for the three still at home - Klaryssia, Kameron, and Kobi - I have dreams.

The older kids all had pretty "typical" kid lives. Kris and Kelsey were involved in sports. Kris (Rain) played basketball and football through high school, both in school and on Colorado's version of AAU. He had a football and basketball scholarship for college. Kelsey did club gymnastics for many years, then switched to competitive and school cheering through her Senior year.

They went to dances, roller skated, and hung out with friends. We traveled all over Colorado, Nevada, and California for various tournaments and competitions - for both of them. In short, despite the decidely non-traditional family I built around them (the "original Rainwaters), I managed to give them a pretty well-rounded, fun upbringing. And they are really great young adults. I'm beyond proud of them.

But, these younger three haven't had those opportunities.

Most of their lives have been wrapped around Kameron and his intense medical needs. Months and months of their childhoods have been spent in waiting for Kam and me to go into the hospital; get out of the hospital; heal up from the last hospital visit; get ready for the next hospital visit.

Therapies, getting school arranged, getting medications (you'd be surprised how much time the whole prescription process can eat up); then just the regular stuff of regular life: laundry, grocery shopping, meal preparation and eating, keeping up on housework, homework (for Kobi), blah blah blah!

They haven't had too many opportunities for things like going to the Y to swim. Just heading down to the mall to walk around, or going for a family drive on a Sunday after church and maybe stopping off for fish and chips...or for after-school activities like the school carnival, or neighborhood movie night.

I'd like to enroll Kobi in martial arts classes, or drama. Definitely drama. Klaryssia could go to the Special programs they have for Special young adults at our local parks and rec department.

They are getting older, and I feel like the window I have for helping create childhood memories and experiences is slipping away for them. We spend most of our non-school/non-medical appointment time at home. Mostly because it's just so darned hard to get out. Things like helping Kam on and off a toilet take time - and when you are out, using a public restroom isn't the easiest - but it is possible.

But the biggest barrier is really the transportation. To be able to just lower a ramp, wheel him into a van, and strap everyone up and go? That sounds like a dream to me.

I can't wait. Thanks to everyone helping make this happen - thanks for caring,

Kathy, Kam, Kobi, and Klaryssia

Is it Just Me?

My kids are mega-spoiled. They are more demanding than rock stars who want their water a specific temperature and all the green M&Ms picked out of the bowls before they arrive.

"I need the blue bowl. Did you give me the blue bowl?"

"What color is my cup?"

"We are out of ice cream. When are you going to the store, Mom?"

"I want Cinnamon Toast Crunch. Go to the store, Mom."

"No toilet paper."


"Did you record Mickey Mouse Clubhouse?"
"Today is my bath day. I want to take it with Kobi.
I want to be in the frontnoIwanttobeinthefrontnoit'smyturnnoit'smyturnnoit'smine. ItsMINEEEE"


So when I was cruising through some old pics I have stored on Shutterfly.com from ages ago, like eight years or so, I was pleased to find that they stirred up some mommy-appropriate emotions. Tell me what you think...keep 'em?

The Daily Grind

This parenting gig is hard. I mean, I had a suspicion during the first twenty odd years. But, with this second group of kids (ages 17, almost 10, and 9), I am certain.

'Course, there are a few differences with this second group. The most glaring being that I am now twenty years older. Initially, I thought that should give me an edge. You know, I know the little ways kids try to manipulate you, have all the pat parenting answers down -

But these three defy my mom logic.
 
They aren't logical at all.

When you take three "damaged" kids, with a variety of issues and stir them all up in one household what comes out is a complete crapshoot. And by crap I mean the other word. Take Kameron at this very moment.

We have an ongoing power struggle between Kameron and Kobi over who opens the gate on our way out to the bus stop. They were alternating days, but believe it or not, that got too difficult to keep track of. So, in my infinite *cough cough* wisdom, I came up with alternating weeks. Mon/Wed/Friday one week, and Tues/Thursday the next.

This seemed to work for awhile. Kam just required one or two reminders, "What days do you have this week, Kam?"

"Oh. . . (insert correct days here)".

But lately he's been slipping. This morning, he argued for a good ten minutes that Kobi had Monday/Wednesday/Friday last week (which he didn't), and that Kameron himself was Monday/Wednesday/Friday this week (again). Evidently, he's wised up to the fact that Tuesday/Thursday is not the greater deal.

It went like this:

"Mom, can I open the gate?"

"No, Kam, Kobi is Monday/Wednesday/Friday this week."
"EHHHHEEAAAA!! Kobi is NOT Monday/Wednesday/Friday, I AM!"

"What days were you last week, Kam?"
EHHHHHEEEAAAAAA!!!"
"What days, Kam?"

"I was NOT Monday Wednesday/Friday!!!"
"Kam..."
"It's MY day to OPEN THE GATE!"
"Kam, what days are you this week?"
"IT's MY DAY! I am NOT Tuesday/Thursday!"

And so on, for about ten minutes. While I'm trying to get him on and off the toilet (I know, TMI) and get his AFOs on and get his teeth brushed and get him in his wheelchair. He also has this endearing habit of stiffening his entire 75 pound body when he's yelling. This makes all of the above ever so much easier.

I finally wised up and said, "Hey Kobi, you get to open the gate all week! Kam doesn't want his Tuesday/Thursday!"
"I do TOOOOO!"
"Oh, so you want to open the gate Tuesday/Thursday?"
"Yes".
 
Peace is momentarily restored.

This lasted until it was time to turn off Mickey Mouse Clubhouse and head out the door to the bus stop.

"EHHHHEEAAAAAAA! Do NOT turn off Mickey Mouse Clubhouse!!!"
"Okay, I'll just let Teacher Parnell know you aren't coming to school today, then. I'm walking Kobi to the bus stop, see you later, Kam."
"NO!"
"Oh, you're coming, then?"

And once again, peace is restored. Just like flipping a light switch, he's happy and deceptively compliant.

This crazytown adventure in parenting goes on every day in some fashion or another. Kameron and Klaryssia can pick the most seemingly unimportant, random thing and escalate it into a UN-sized crisis. My "normal" bag of parenting tricks applies not at all. And when the two of them feed off each other and Kobi thinks it would be fun to stir them up . . . I'm thinking 7:00 am is not too early for a glass of white wine.

I guess the biggest thing is that while engaging in power struggles with them obviously won't work, often neither does trying to twist their logic around. These kids have stubborn down to an art form - it's why they've survived so long against all the odds - and when they bring it to bear on me. . .argh.

Once again, the inmates are running the asylum. I think I need a vacation. Is it too late to turn these kids in for some nice grandchildren?

BTW I am having trouble with the new Blogger Editor - it's not formatting the text like it should,  I do apologize for the odd layout!

I Have a Confession. . .

I have a confession to make:  I haven't been to church in months.  Really, months.  Since Rain's wedding in July.  That's a very long time.

Why?

Lots of reasons, I think.  None of them good, none of them important enough to keep me from worshipping in fellowship with other believers.  I think.

Maybe it's just enough trouble within my heart and just enough difficulty getting there. I still haven't re-established a healthy communication with God; still not praying/talking with Him regularly; still not "in the Word" as we Christians like to say. . . I used to devour His Word.  Literally eat it up. 

I miss that.

I miss talking with Him and hearing from Him.

So, why am I resisting?  No clue.

I haven't stopped believing.  I know He's real.  I know He is good. I've walked with Him for twenty years. . .

Every Sunday, the kids ask if we're going to church. 

We don't go. 

It's always been difficult to go to church.  Well, not always.  Mostly since we moved to Colorado Springs, that's when the "difficult" started.  At that time, it was just me and Kelsey and Kris.  A young, firey white girl with two little bi-racial children (who were adorable!).  For years, I discounted the polite looks, the quiet exclusion from conversations, the sense that somehow my little family just didn't fit in. 

I found myself switching churches.  I'd never thought I'd be one of those.  After all, we have trouble relating in our families, why would a family of believers be any different?  But somehow, it was.  Somehow, my heart just couldn't take not mattering.  I was in Bible studies, in choirs, led children's worship with my trusty guitar, went on ladies retreats, joined small groups, led small groups. . .and still failed to make strong connections with anyone.

I was a single mother, going to the denomination's Bible College, working full time and taking classes full time, and still "ministering" in the church . . . and I never felt so alone.

It certainly didn't help when I bought a huge house out in the country and filled it up with handicapped children.  My enthusiasim and passion and belief carried us far - especially in making all the parts of the house and care for the children work - but even then, I couldn't truly connect to the Body.  When I approached the Pastor about someone from the fellowship helping with my special needs children in a Sunday school class (both for the children and for me, so I could attend services and not be sitting on the pavement outside holding an unruly child on my lap listening to the service over a speaker); his response was that if I felt there was a need, probably God was calling me to that.

Naively, I thought well, okay, and started a Special Needs Children's Sunday School class.  So, not only did I get to care for my kids 24/7 at home, I got to take care of them and other kids on Sundays, too.  And, I now had the extra job of finding helpers for the class.  Wow.

But, I don't want to go into all this here.  I mention it to say that I'm pretty sure that a huge part of why I am not going to church today is that, while I've found a Pastor I respect, and going to his church completely satisfies my heart - I am still very aware that my special child (now only Kameron), is a little different (well, alot) and doesn't fit into any nice age group of Sunday School children.  With his mental and physical delays, he's better suited for a first or second-graders class than his chronological fourth grade one.

In short, he takes more effort.  And, even in our large church with all it's many many ministries, there doesn't seem to be anyone who wants to take on this little child, even for a few hours on Sunday.  And it breaks my heart - again.

He benefits so much from God's Word and from the music - he memorizes scripture like crazy, and he's the first one to ask if he can pray for you if you have a problem.

But, he is different.  He is in a wheelchair and talks funny and is in diapers. He can have inappropriate behaviors (like throwing the playdough around and laughing like a lunatic).  He isn't an easy child, I know this.

But doesn't he matter to God?  Of course he does.

Shouldn't he matter to a body of believers? Of course he should.

He is the least of these; one of those Jesus spent time with while here.  Kameron matters greatly.

I have to say that I hate writing this.  I feel like I'm being horribly disloyal and expecting too much and that the problem must be mine, not anyone else's.  Like if I really want to go to church with my handicapped son, I should go - full speed ahead and damn the consequences.

But the zeal and fervor that kept me plowing ahead like that for so many, many years is pretty much gone, now.  I am tired.  I am tired of fighting to be included - heck, not even included, just to get in the door (there's no handicapped access to the children's ministry).  I'm tired of cheerfully smiling at the pretty young couples with their beautiful children who all quietly step back a few paces and try not to look like they're checking us out.  I get it all the time out in public, twenty years of it.

It hurts too much to see it in church, too.

And so, another Sunday is spent at home.  And I hurt.  I hurt for Kameron, I hurt for Kobi and for me.

At some level, I hurt for those missing out on getting to know Kameron, too.  He is a very special little boy.  He deserves that love and acceptance.  But, I'm just too tired to fight for it right now.

Field Trip Fun. . . Day One

Kobi and Kameron are both in the third grade.

Kobi is in Mrs. Hayes class.

Kameron is in Mrs. Parnell's class.


As most parent of school-aged kids know, as we approach the end of the school year, the number of field trips increases. I suppose this is due to a few factors: a) the weather is nicer b) the kids are more antsy c) the teachers are running out of new things to teach or d) the field trip budget needs to be spent.

Could be a combination of these factors, and it could be I'm full of it. Very possibly the latter. In any event, field trip season is upon us, and in my history as a mommy, I tend to do at least one trip per year per child. Since I've skillfully managed to avoid all the previous ones this year, I was honor-bound to sign up for this, the last field trip of the year. For both of them. To the same beach. In the same week. In fact, Kobi's was Wednesday, Kameron's was Thursday. Woo-hoo! Today's blog will focus on Kobi's Wednesday trip with Mrs. Hayes' class.

Turns out, our local protected beach area, Seahurst Park, was experiencing a convenient series of super-low tides right in the middle of the school day. That translates into about seventy-five (give or take seventy) buses full of children crammed into a parking lot designed for fifteen cars.
The tide was especially low on Kobi's day: Wednesday.

The weather was terrific - mid-seventies, we had our beach-combing shoes on (well, most of us got the memo. a few kids were in flip-flops, some were in what used to be their "good" shoes), we had our sack lunches, and were ready to go!

The bus ride revealed to me another job I will NEVER, by the grace of God, hold: Bus Driver. People say all the time that they couldn't do what I do. Frankly, I don't know how some of you do what you do. Bus Drivers have my utmost respect. Managing that unwieldy vehicle while trying to hear yourself think and keep those little monsters safe . . .? Most def, not for me.

This is Rhonda, our Naturalist and field trip/tide pool guide for the day:

She's the one on the left.

But first, lunch.

Then, play.

Then off to the tide flats we go. . .

Malia searches for signs of life . . .

As her mother braves the fish run
to save a lunch sack:

We found live Sand Dollars . . .

and Sea Stars (aka Starfish).



We learned about crab molts (somewhere a bare-naked crab lurks) .

We watched our steps . . .

and looked under rocks . . .

and really learned a lot.

Thanks, Seahurst Park. See you tomorrow!

Kobi Has a New Friend

Disclaimer: this post is a little...well, maybe a lot, creepy. Just so you have a heads up. No pun intended.

My eight year-old son likes to do hair.

Wow. It's so freeing to just come out and say that.

He's always been fascinated by it - combing out old Barbies, stealing his sister's hair ties, learning how to tease - you know. He's even gone so far as to arrange various types of laundry in jaunty 'dos on his head. Beehives made out of t-shirts, dishtowels for long, flowing locks...he's even braided bathrobe ties and given himself pigtails.

I'm sure you get the idea. He's a tad obsessed. Once he went on the computer, googled "french braiding", followed the links to YouTube and replayed said searched-for video too many times to count until he - at the age of eight - taught himself how to french braid.

Now, bear in mind that Kobi is struggling with his education. Math is NOT his friend. In third grade, he's getting way behind. Yet, he manages to search for, find, and implement instructions on weaving hair that most moms can't follow.

It gets weirder.

My older son, Kris, is getting married this summer to Kami, who just finished hair school. She has these styling mannequin heads for practice laying around her car. Kobi saw them and became - you guessed it - obsessed. All he could talk about was those heads. We tried a trial run to see how he handled them (because it's taken almost a year to get him to stop braiding his t-shirts), and predictably, it wasn't pretty.

Not only did he do "her" hair, he named "her" Viola, carried "her" around cradled in his arm all day, took "her" outside and stuck her on the fence (I kid you not), and, he had deep and meaningful conversations with her. WAY too freaky for this mom.

So, the mani-head went into timeout. Indefinitely. Like solitary confinement for life.

Meanwhile, Kobi's been working on a deeply personal matter that only occurs at night and requires the use of special night time items in order to keep his sleeping area...shall I say, dry?

This has been an ongoing source of much conflict with no apparent end in sight. I mean, he could go on his honeymoon needing pullups. SOOOO, being the on the ball mom that I am, I put two and two together and came up with a "reward" (and by reward I mean bribe) that I thought might finally do the trick: any morning he wakes up dry, he gets the mani-head.

Yep, I went there.

It's been months and months. TONS of wet laundry, etc., but Kobi has now managed four, yes four, dry nights. Not in a row, but hey - any progress is awesome in my book. His future bride will probably appreciate it, too.

Now the mani-head is back in the picture. And the funny part is, he's not quite as enamored with her. Yes, he still talks to her and smuggles her out to the yard, and yes, he sleeps with her next to him and GI Joe...but I'm afraid the honeymoon is over. I've seen him swinging her around by the hair out in the yard like the hammer in some grotesque track and field event.

If he's upping the ante in this payment for no pee deal, what the heck is bigger and more desirable than a mannequin head of your very own? Bubble gum?

Pray for me.