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??

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.

More Spring Break

Okay, so this week my elementary kids and high schooler are home. It's just crazy how many days they are out of school. How does any normal, work-in-an-office parent do it? GAH!

I love my kids, but boy, this is too much togetherness.

One of the big challenges is Kameron's lack of mobility. We don't have a wheelchair van, so that means lifting him a lot and hauling his wheelchair in and out of the car. It wasn't such a big deal when he was younger, but now he's nine and weighs more. His chair is bigger, too. He also doesn't help much with the transfers. All this tends to make me think several times before attempting a trip out, even to the store. I'm also realizing that all the "handicapped accessible" places aren't very. Accessible, I mean. Lots of unexpected stairs.

Now, this isn't something a typical family deals with. My previous parenting experience was fairly straightforward. But, since Kam's still not walking (he keeps trying!), I guess I better face the reality that he'll be in his chair for awhile, if not for his lifetime (toungue biting here - that's DEFEAT, isn't it??).

Crazy as it seems, I never allowed for the possibility that he wouldn't walk. Somewhere in my brain was the idea that God + me = overcoming any and all obstacles. Guess I should have read my Bible a little closer. Sometimes bad things don't get taken care of this side of heaven. Kameron very likely will remain non-ambulatory (big words for not walking). Really, I need to be way more grateful that he's even alive.

All the really big health challenges he has had in his nine short years. Born very premature - at 25 weeks - drug exposed, lungs barely developed, ventilator dependent, fed with a tube in his tummy, for his first three years. We get him over all that, then massive brain junk starts. Too weird and complicated to go into in depth, but basically, he's had over thirty procedures trying to stop large fistulas (nests of arteries) in his head that don't belong there and posed a real risk of stroke and hemorrage...all that culminated in brain surgery last August 1st. Thirty-two stiches in his little cranium.

Ugh AND gah.

He's doing so much better, now. He's trying to learn math, and writing, and reading...loves the Bible, music, and me. Well, he loves all of us, except when someone says no. But that's another story.

So, actually, I have got to be way more grateful for his little life and less focused on the difficulties. Perhaps if I pray about these challenges...what a concept: stress less and pray more!

Gotta go, got Someone to talk to.