Wednesday, May 11, 2011

Such a Terrific Day

Hey - I have to tell you all what a wonderful event the ladies of Light of Life church in Kent put on for Kam's van this past Saturday. It was a rainy day - shocking, right? - and despite the rain, they had a room packed with tables and displays and shiny things. There was a raffle going on; candles lit; chocolate (score!); balloons; and more.

I took my hats, too. Now, my original plan was to have daughter Kelsey there to act as back-up for the monsters (you know who I mean). I know my fam, and their ability to maintain in a social situation starts to degrade after about an hour, tops. And in our family, when they are done, the gloves come off.

The trouble was, Kelsey's college had graduation right at that same time. She's going into her senior year and had a ton of friends graduating. And, in my opinion, Kelsey's given a pretty big chunk of her twenty-one years helping with the "little kids." I insisted that she go to the graduation. "I can handle the kids, Kels. I do it all the time."

Big words.

The event went from 10am - 3pm. That's five hours. can see where this is headed.

We were late to begin with. Not surprising. When I think of analogies to getting us all ready and out the door for anything, I think of how difficult it must be to, say, maneuver a massive cruise ship or one of those jumbo-sized container vessels through the Panama Canal. You know, they don't exactly turn on a dime. You need lots of lead time.

Plus, we had lots of things to load up: wheelchair, backpacks full of potential distractions for all three kids, the boxes with my hats and stuff, flyers, and changes of clothes (just in case). Totally forgot food or snacks. But, hey, I'm not perfect, right?

We got to the event just before 11am, and I have to say, the kids did pretty well. Klaryssia tried to talk to anything and anyone that moved (nothing new here), Kobi exhibited his newly-emerging rebellious behaviors (glassy stare, ever-so-slightly raised eyebrow in response to my requests, and flat out ignoring me), and Kameron tried to hug anyone nearby. This can be a little off-putting, because since he's sitting down, his hugs land around most folk's hips. Awkward.

But, they eventually settled in, and kept busy for quite awhile. I was proud of them. We made it almost to the end, and they really had a great time. It was only in those last hours that Kam hit Klaryssia and she squealed loud enough to be heard in the next state, and Kobi hit Kam because Kam wanted Kobi's Nintendo DS, and Kam started trying to wheel his chair over everyone in his path because he wanted to go outside in the rain and play basketball.

But before all that, these wonderful women spoiled us and came over to meet us, and just generally made us all feel very welcome. I wish I knew everyone's names to say personal thank yous. The kids and I are so grateful for your efforts, and we had an amazing time. God bless you, every one!

Friday, May 06, 2011

Hi everyone! Lots of stuff happening!

We have a big fund raiser for Kam's van tomorrow, Saturday May 7th from 10am - 3pm. The Light of Life Lutheran church in Kent, WA is holding a gathering of several home-based businesses like Mary Kay, Pampered Chef, Scentsy, Avon, Touchstone Crystals, and I don't know who all else. I'm planning on being there, too - with my hats =-). The address for the church is 28525 216th Ave. SE in Kent.

I'm so incredibly grateful to this group of women; most of whom don't know us from Adam (so to speak). They heard about our project from Ellen Lamb, an old co-worker of mine and an adoptive mom, too. This apparently led to this wonderful fundraiser. They've even enlisted Thrivent Financial, a Lutheran Foundation (I believe) to match funds raised during this event - 2:1. AWESOME, yes?

So, if you pray, please do for this event - it would be SO fantastic if we could have a great turnout. However it goes, I am feeling blessed by these women and their hearts for my son and my little family. I can't wait to meet them tomorrow. Pictures will be taken and posted on Kam's Facebook group/page.

My little Etsy store has generated a few hundred dollars in sales toward the cause - Yay! I love it that people like my things; one of the teachers at Kam and Kobi's school special-ordered a men's beanie in Sounder's colors. That was fun. And the Front Desk Lady ordered three hats for her granddaughters for Easter. So sweet! I make afghans for big and little people, too. Feel free to message me if you are interested. It all goes to the van!

Love to everyone, and don't forget Mother's Day!!!!!


Monday, February 28, 2011

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.


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 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.

Thursday, February 24, 2011

Okay - Cancel That.

So, I'm whining and worrying and complaining. All the antithesis of faith.

Where has my faith and trust been the last, oh...several years?

Idk, but I'm going to, one day - today - put both feet down on my Solid Rock and just trust. And wait. He is bigger than Ellen, bigger than ALL my efforts for this darned van. I will just wait.

If it's His will for Kam to have that van, then it will happen. Without my "efforts."

I apologize for the self-pitying nonsense from yesterday. Today is a new day, and I will trust and I will shut up. =-)

Thanks to my new friend at for the reminder of what I was like when I simply trusted and obeyed.


Wednesday, February 23, 2011

Hard Work

I have to tell you guys, asking for help is hard work.

I don't do it much. Probably because it's so darned hard. It isn't just the asking - though, that's pretty difficult - it's the balance you need to maintain and the waiting, and the letting go of the outcome part that hangs me up, I think.

The whole van thing's been coming on for years. The knowledge that someday Kam would be huge, and that I wouldn't be able to keep transferring him has been hidden in the back of my head, crammed in with a bunch of other "things to think about later" thoughts. I've had back and neck problems for years (not just from lifting him, but that's where my stress sits - like most everyone's does). And anyone who knows me has heard me talk about it for a long time, too.

But it's one of those things you just don't bring to the front burner because you really have no idea how to address it. Money's been an issue for quite awhile - though I probably could have saved enough for a decent used van by now if I'd been diligent - but something else always seemed more important. So, I waited. I delayed. I procrastinated.

Then came the surgery. Talk about eye-opening. I'd resigned myself to being home with him the entire six weeks he was in the spica cast. He was just too wide and heavy. He'd NEVER fit in my car, and barely fit in the rented wheelchair. So, that I was okay with. But when he came out of the cast on November 8th, I must have imagined he would rehab for a bit and then be all better, bearing weight on his legs and helping with transfers, like he was before.


He was in more pain then I'd ever seen him in, and he's been in a lot of pain over his short life. Oxy-codone pain; pain so bad it made him throw up. Serious pain. But this cast removal post-op recovery thing put him in a tailspin, and me too. Physically, he was as weak as a newborn, but weighing 114 pounds. He cried every time I touched him: doing his range of motion (exercises to stretch him and get his muscles back - 3x a day) or moving him from any spot to any other (like from the bed to the wheelchair or the commode or the tub). It was horrible.

It took two people (a part time care provider and me) to get him in and out of my car. One of us (me) inside the thing pulling him up into the seat, and one on the outside trying to get his hips up over the side of the car, him crying all the while. More horribleness.

Somewhere in this nightmarish time, I started really jonesing (old addict-speak for serious craving) for a van. All I could think about was how much easier our lives would be if we could just roll him onto a lift and strap his chair down and drive away.

I fantasize about it. It would be safe to say that I'm almost obsessed with it.

Now, that's not a good thing. It's skewed this whole fund-raising process. When we are obsessed, everything gets filtered through that obsession. My self-worth is getting tangled up in whether or not any money comes in.

Here's some of what I've done: I tweeted every major person who "helps" I could think of; went on the Special Needs sites and blogs; emailed and tweeted local news stations and people; called and emailed local associations that help adopted, special needs and foster children, DSHS people, Van dealers, local and national, Kam's therapists (past and present); churches, every friend of mine I could think, I've opened an Etsy shop (online craft selling) and am making hats and scarves every night when I watch TV. I can't think of more to do.

But it's very very slow going. And, that's probably okay. I have never tried to fund-raise before, I don't have a paradigm for how it should go.

For me, though, it takes a lot of time I don't really have. And I'm getting really tired. Trying to raise this van $ is just one more huge job in a life crammed full of huge jobs. I apologize here, I'm sliding into self-pity, and I HATE self-pity. I haven't blogged in quite awhile, and part of the reason is I can't come up with any happy, hope-filled topics. I'm just getting worn down by the daily struggles - and don't know what to do about it. The Bible says, "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." Proverbs 13:12

I am really fighting against this slide into hopelessness. But it seems like I've been fighting for, well, for my whole life, and I'm wearing out. So, please pray with and for me. If we don't get the van, I guess we just don't get it, and we'll adjust. I'll try to keep saving and making my little crafts; I'm finally submitting some stuff for possible publication, too - maybe that will "work." But in the mean time, I need to get my darned chin up off the freaking floor and do more than just make it through each day. I need to get some of that "life" stuff flowing.

As I wait for Ellen to call.

Thanks for your patience, everyone.

Friday, January 28, 2011

Why Special Needs Kids?

Okay, so we've established that I'm completely nuts. Not only did I decide, fifteen years ago, to become a foster parent as a single mother, I already had two children, but what the heck??? I decide to be the foster parent to special needs children. See? Nuts. But wait, there's more!

THEN I decide to adopt some of the little boogers. Whoa. Certifiable.

Yes, I agree. People tell me I'm a freakin' saint. Not so. Not so at all, in fact.
I think it's more obedience. Foolish, sold-out obedience.

See, back when I was doing the big house, tons of foster kids, crazy ranch thing, I was also practicing a very simple faith. He said it, so I believed it.

His Word said to love as I'd been loved. I'd been transformed by His love, so I knew it was real. Therefore, I needed to love that way. Simple, right? Along came my first disabled foster children. Okay, they're a little odd. Yes, it was weird having teenagers in (gulp) diapers. But that love thing? It didn't have any strings about diapers on it that I could tell.

So, I loved them. And God took care of us.

More special kids came. Come to find out that "love" thing can cover a whole bunch of inexperience and lack. I learned about PTs, OTs, STs, and all the other "t"s. (Therapies). I learned about a whole cornucopia of medicines. Meds for Seizures, meds for constipation, meds for ADD and OCD and all that stuff. I literally had a tool box locked up filled with meds for these children.

Oh yeah, children. They were little people. On the foster care totem pole - which already has an awful lot of damaged and unwanted children - the DD/Special kids were pretty much at the bottom.

But they are children. And they are people. Little people let down by parents who probably were damaged themselves. Some of my kids were from "typical" homes where the dad couldn't hang and took off, leaving a mom alone with a child she couldn't find resources to raise. The way our system is set up, if you have a job and a special kid, you won't get much help. If you put him or her into foster care, though, then they can receive all kinds of services. Or, you can quit working and go on "assistance" yourself. Decisions, decisions.

So along the road of just loving these children, I found out a funny thing: I actually did love them.

Beyond the diapers and drool and slurred speech and repetitive behaviors and braces on body parts and range of motion and equipment needs and meds and doctors appointments and tooth brushing and IEP meetings and hospital stays and fighting with everyone to advocate for these kids . . . is the bottom line fact that they are children. They didn't ask to be born. They especially didn't ask to be born the way they are. They didn't ask to be abused or neglected or abandoned.

Someone has to care.

And I'm exceedingly glad it's me.

12He said also to the man who had invited him, "When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. 13But when you give a feast, invite the poor, the crippled, the lame, the blind, 14and you will be blessed, because they cannot repay you. Luke 14:12-14a

Thursday, January 27, 2011

A Shameless Plea ...

Hi all -

The following is a shameless plea for help.

As many of you know, my now eleven year old son, Kameron, has had a pretty tough road. He was a 25 week premie with a grade four brain bleed (translated: he was born 3 months early because his biological mom couldn't stop hitting the crack pipe while she carried him and he should have never survived his extreme prematurity); after he came into my foster home at a year, on a ventilator and with a feeding tube in his tummy, he thrived, and around 3 years later, was off the vent, had the tube removed, and was looking great.

Then, when he turned five, he inexplicably began having massive migraine headaches, vomiting, seizures, and stroke-like symptoms. Turned out he had some crazy thing called Arteriovenous Malformations. Lots of them. They are kind of like aneurisms in his brain, threatening to burst and kill him. More than thirty procedures, including brain surgery, later - no more major seizures. In fact, he's been mostly seizure free since August 2008. Awesome!

So, now we address his other physical issues. Little man can't walk. He's been scooting on the floor, and with a special walker (called a gait trainer), he can move around some. To the Orthopedist we go. Now, we've been going to the Ortho doctor for years. But, this time, when we did a check-in hip x-ray, this is what it showed:

Now, I'm not a professional, but these babies looked bad, even to me. He needed surgery on both hips. The operation included cutting through both femurs (say WHAT?), bolting them back in the right place, and rebuilding his left hip socket.

Sure, says I. We can handle that. Ha. "We"? Kam's the one who went through it all. I just helped with the after care stuff. The surgery was September 14th, 2010. It lasted six hours, and he came out in a thing called a Spica Cast. It encased him from just below his nipple line down to his ankles, made him look a lot like a little plastic cowboy, you know, how their legs are in the ready-to-sit-on-the-saddle position? Like that.

And yes, there was a hole in the front and back for the personal hygiene stuff. Enough said.

He was home the entire six weeks, mostly because he was doped up on pain meds the first two weeks, couldn't poop the next one (kidding, kind of), and really because the only wheelchair I could fit him in was completely unable to be transported on a special bus. He had a tutor for a few hours each morning, Mr. Steve.

Transferring him from place to place - like bed to commode to wheelchair - was accomplished with the help of a thing called a Hoyer Lift. That's the pic at the top of this post.

Okay, so we get through this. He has the cast removed, and we start physical therapy, pool therapy, and getting back to school therapy. What didn't I plan for? Oh yeah. He's had major surgery on both of his legs. And both hips. Hummm. Guess there will be some weakness, pain, and general tough stuff. Yep.
But, he's a tough kid. "Survivor" doesn't begin to cover it. He is a bit cranky - ha! But, so am I by this point.

Bottom line, he, me, we, are all doing better. BUT the reason for this particular post is to, as I said, make a shameless plea for help. Kam is officially a paraplegic. Actually, I think they diagnose him as a quad, because he has a really weak left arm, and they don't call people tri-plegic. But, I don't have a way to transport him. I drive a Pacifica. It's kind of a station wagon. Not a van, not a sedan. In order to take Kameron to his many medical appointments, I have to lift him up into the bucket passenger seat, and then lift his wheelchair (which weighs 27 kilos - 59 pounds) into the back of the car.

Kam now weighs 110 pounds.

I am a strong woman, thank God. Really, I mean that. But, I am not getting any younger. And the years of caregiving are taking their toll. My back is prone to serious spasms, and frankly, I avoid taking Kameron out at all costs. Obviously, I make it to the necessary appointments; I have to. He has to see the PTs and the OTs and the doctors.

But, I have for years wanted to be able to take him out on regular family type things. To go to the park. To take him to the movies (although behavior can be a bit challenging...), for crying out loud, I'd like to just throw him in the car and go to the grocery store.

He needs a wheelchair van. Seriously.

I have looked into this for a long time; they aren't cheap. A new conversion van is in the 35k range. Funny thing is, I looked at a used Caravan, a 2000 Caravan, and the price on it was $20k. Even used, they are extremely pricey. And I just don't have the ability to finance one. There are some on Craigslist that are from the 90's that go for around $6,000, but I can't swing that right now, either. And he is getting bigger. We just got him fit for a larger wheelchair.

SOOOOO, I am asking for help. I added a "donate" button at the top of the blog. If any of you feel like you could or would be able to help in this, I would be beyond grateful.

Kam's had a some challenging times, and yet, he's a really good boy. He has a long road ahead, and frankly, as his sole caregiver, so do I.

Anything you can do would be so so so appreciated.

Thanks everyone. Oh, by the way, this is how his hips look now:
Aren't they BEAUTIFUL??

Sunday, January 23, 2011

Unconditional Love

The kids and I got to church yesterday. It's the first time in more than eight months, and I was glad to be there. For a lot of reasons, really. First of all, it was terrific to actually get all three kids together and go somewhere as a family - somewhere that wasn't a medical appointment.

I planned ahead.

Kobi would go down to the children's program (it's downstairs at this church we go to); Klaryssia would stay with Kameron and me upstairs in "regular" church. For this to happen, both Klaryssia and Kam would have to have distractions. Quiet ones, preferably.

Klaryssia packed her dog-eared Bible (she likes to look up "versions" and copy them down for fun), her MP3 player from Christmas (the ear bud cord is already sporting a few patches of purple duct tape - don't know HOW she breaks the cord, must chew on it), some gum, a few pens and plenty of paper.

For Kameron, I crammed his backpack full of stuff: his portable dvd player (got that for hospital trips, works like a charm, just stick in Mickey Mouse Clubhouse and we're good to go); his Leapster (he likes to do math games), a bag full of granola bars and fruit snacks (when all else fails, feed him), a notebook (to write out math problems when the Leapster joy fades), several markers, and a hardback copy of Eclipse (he likes to look at the page numbers and chapter headings).

Off we went.

We got everyone loaded almost on time (about 15 minutes behind schedule, which is practically the same as on time). Headed over. Unloaded, wheeled into church. A nice usher offered to take Kobi down to the kid's area. We settled into the almost back row, experience tells me to be close to exits in case someone's about to lose it. And, hey. It worked! Kam stayed fairly happy - I had enough of the right things to keep him entertained and almost quiet. Klaryssia LOVED the singing - she sang as soon as the words popped up on the screen, which was a tad ahead of the actual music, but hey, she was having a blast. She smiled and swayed to the music the whole time.

I was just so grateful to be there. Me and God are kind of in this quiet place in our relationship. Well, I am. I'm pretty sure He's just hanging up there, waiting on me. I spent twenty-eight years as a non-believer in Him. Long, sad, lonely years, angry at everyone and full of blame and self-pity.

Then, I met this crazy lady who was nice to me. She offered me a ride with my groceries, and later invited my then very tiny family (just Kristopher and me) over for dinner. Blew me away with this kindness. As I said, I was very sad and lonely. She talked about her church and about how God had changed her life. By the end of the night, I was asking to go.

This church, tucked into one of the fringe neighborhoods around the edges of Seattle, was small. Maybe a hundred people on a good Sunday. But they were so sweet to me, so genuinely welcoming and interested in me and in my little bi-racial toddler boy. They weren't shocked that I, a tall redheaded white lady was there with him (remember, this was twenty years ago, single moms and mixed-race kids were rarer then). They didn't press for info about his dad, or our life-style (which I expected, after all, aren't those "Christians" so judgmental?). They just welcomed us and really accepted us. That got me interested in this God they loved.

One thing led to another, I started reading - for the first time, really - the Bible, and before I knew it, I was His. I want to be clear: it wasn't the people that "talked me into" making such a radical decision. It was His Word and the response I felt in my soul, deep down where nothing was living - it spoke to me in ways I can't describe. So, I told Him, "Let's go for it!" And my life changed. Not lonely - I had Him; not sad - ditto. Plus I had this whacky little group of old ladies, middle-aged folks, and odd-balls at this church. They loved us. Unconditionally.

Then I moved to Colorado Springs to Do Big Things for God. What followed were fifteen of the best and hardest years of my life. Way too much to cram in here - there are probably older posts that cover some of it - but, my faith took some really big hits. I think I started loving Him conditionally. Based on what He could do for me but didn't, for what ever reason. I had a set of expectations in mind when I started all this work for him, and He let me down. Which sounds pretty ridiculous, because if the work was for Him, and He had a plan, then how could He let me down?

But things didn't go like I'd hoped. And it hurt me bad.

So, back to why church was so great yesterday. No one really sought us out, or especially welcomed us. No one went out of their way to say, "hi". And that was completely fine. I wasn't there for the people, necessarily. I was there to represent. My loyalty is to Him. He's done great and amazing things in my life, and even if they aren't all turning out how I'd hoped, planned, and expected, they are amazing nonetheless. And I will stay faithful.

Somewhere in the message, the Pastor talked about having unconditional faith in God; loving Him in all circumstances, like Paul did. Paul, who didn't have an easy time of things, yet never stopped loving and never stopped believing. My job is to stay faithful whatever happens, no accusations, no finger-pointing, no fist-shaking. My job is to love Him unconditionally, like He loves me. When I am faithless, He is faithful.

I need those reminders. And I think that's what church is for, really.

Thanks for reading, much love -

Friday, January 21, 2011

The Road Not Taken

The Road Not Taken
by Robert Frost

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.[1]

The Road Not Taken

The Road Not Taken
by Robert Frost

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.[1]

Tuesday, January 18, 2011

The Road Taken

I've been a single parent to special needs children for over fifteen years. This has been by my choice - I fostered my kiddos before I adopted them, and I had many other special children in my care for quite a few years. So I went into this "specialized" gig with both eyes wide open.

Now, I'm not saying it's an easy gig. Or, that I was 100% prepared for the intense level of parenting it is. But, I've really been noticing the difference choosing makes.

Let me explain.

I have a friend whose boys were born autistic. Her marriage broke up when the boys were in elementary school, and she's raised them on her own ever since. Now, they are in their late teens, and she's still alone, loving her boys, taking care of them, and trying to make their lives as happy and "well-adjusted" as square pegs can in this round-hole world.

They do movies, and sometimes the Art Museum. Disney on Ice is a big hit for them, too. They make it every year. They're a bit conspicuous at Disney, though. Her "boys" are both well over six feet and not small. But, they squeeze into the little seats at the Arena and wear their mouse ears with pride as they sing along with the Princesses. They love to go to the zoo, and the State Fair each summer.

I admire how much they do, how active they are despite some significant behavioral challenges.

But, one night over a glass of wine, as I was rambling on and on about how gorgeous my new granddaughter was, and how sad I was that my son and his little family lived so far away, I happened to notice her face. And it hit me like a forehead slap: she would never have grandchildren.

My heart just slipped down from my chest into my stomach, and I felt tears behind my eyes. Oh my word. Here I was going on about missing my son and his family, and here she was - mourning what will never happen. Wow.

I apologized. Sometimes I'm pretty slow.

The list of "nevers" for our kids can be long. Kameron may be eleven, but believe it or not, things like his inability to walk, run, play "real" basketball, swim, rollerskate, ride a scooter--these loses are just now starting to dawn on me. It's like all these years have been spent busily keeping him alive and striving for immediate goals. Things like keeping food down, breathing, and talking - these were his developmental milestones. At least as far as I was concerned.

Lately, though, I'm grieving those losses for him, and for me. All the things traditional parents of special kids have to work through over the years, as their baby grows up and they find something else he or she should be doing, but can't, I'm just now figuring out. Just now seeing the very wide chasm between Kameron and his peers in 5th grade. And it sucks.

But underlying that suckiness is the very strong awareness that if it's this hard for me, this late in the game, how much harder would it have been to feel him grow in my uterus, kicking and swimming around in there, anticipating his arrival, choosing names, talking to him as he grew, having baby showers, fixing up his room...and then have all that crash around me when everything goes completely wrong.

And then it keeps on going wrong, despite your best efforts for your child. That list begins to form.

This is not to say that parenting a special needs child is a thankless, hopeless task. It simply isn't. And most of us will tell anyone that. We celebrate all the tiny victories - and I think that makes us grateful people.

But, it is a grieving thing, too. Our entire belief system has to adjust and change. Dreams for the future of our child need to be adjusted and reevaluated. Our whole world is turned upside down and inside out, and it takes time - maybe a lifetime - to get used to it. Because the reality is that the upside down, inside out world is our new home.

Whether we chose it, or it chose us. Better head on down to Target and get some stuff to make it cozy.

Love -