Feeling Like an Outsider Sometimes

I haven’t been blogging about Taylor much lately.  Part of it is because the business has kept us hopping for the past several months.  In this economy, I’m not complaining.  It also allowed The Bossman and me to take a much needed 5 day vacation to the Oregon Coast…Seaside to be exact.  Just he and I.  It was bliss.

The above picture was taken on one of our many drives.  I’m already to go back.  Taylor actually stayed with her sister so that was great.

Okay, so on to why my title is what it is.  Somehow I ended up following and reading a lot of blogs that involved children with Down’s Syndrome.  I think it’s because it’s the closet thing I can get to what Taylor has.  However, the only thing that really puts her in that group is an extra chromosome.  Taylor’s just happens to be #9.

Trisomy 9p is one of the rare chromosome syndromes.  So it’s not like I’m going to find a lot of bloggers with a child with the same diagnosis.  Then there is Taylor’s age.  She’s 21 years old.  She wasn’t supposed to live this long and I’m thankful every day that she’s here.  Yes were are dealing with new and serious health issues, but I’ve had her for 21 years.

I’ve tried to help out the blogs I follow with things I’ve learned in the long time I’ve been mom to a special needs child.  Sometimes I think I come across as a “know-it-all” and I am not. 

But I also realize that things change so quickly in the special needs world.  What was once standard procedure when Taylor was little is now considered outdated. 

Now I’m running into issues that never crossed my mind when Taylor was little.  The fact that my being her mother did not automatically let me make her medical and life decisions when she turned 18 was a surprise to me.  Spending over $1300 just for a court to say that my profoundly, developmentally disabled child was not capable of caring for herself therefore needed a legal guardian & that I needed to be approved for that role, shocked me. 

After 21 years of caring & loving my child, I now needed approval from the state?  Yep, you do.

I would give anything if I’d had access to computers & blogs when Taylor was little.  But that was in the “old days”. *laughs*  Please don’t think I feel sorry for myself or anything.  I just needed to get this out.  I think it was what was keeping me from blogging regularly and I miss that.

Also, if I follow your blog, please know that I always read them.  I may comment very infrequently but when I do, it’s because I feel like I can help or at least add to the dialogue.  I want my comments to be more than “oh, that’s a cute pic”.

I think I’m rambling now.  That’s what happens when you just start typing and letting all your pent up thoughts just blurt out with typed words.

And just because she’s cute, I’ll leave you with a picture of the reason I do blog…

The Puppy Whisperer

I just thought I would share with you Taylor’s first love.  She’s always had a deep love for animals but most especially dogs.

This picture was taken at her sister’s house and Taylor treats that puppy like a baby.  The puppy, Jasper, actually belongs to Brandy’s boyfriend who is stationed in Korea but of course, Brandy is keeping it for him. 

However, I don’t think he’ll have a puppy when he gets home in May.  Jasper thinks he belongs to Taylor.  Jasper’s tail wags 5000 mph when he see Taylor.

I truly believe that 99.9% percent of dogs sense something about special needs kids.  I’ve seen Taylor be able to pet and love on dogs that wouldn’t let another soul touch them.

There are some things health wise that are going on with TayTay, but I honestly just needed to write a “feel good” post today. 

Nothing is more heart-warming than this picture of Taylor & Jasper.  You can just see the love in both of their eyes.

Happiness is a girl & a puppy! *smiles*

So Much to Say…

I could say that I haven’t written since November because life has been super busy and that wouldn’t be a lie.  However, if I want to be perfectly honest, I haven’t written because when it comes to Taylor, I just haven’t a lot of good news.

Christmas was hectic because we decided to do this to our house this year.  It was great fun and next year will be even bigger.  Business has been non-stop since August which is the reason we could afford to decorate our house that way.

Taylor had to have another VNS surgery a couple of weeks ago.  At her pre-op appointment, we found out that Taylor only had 1 working vocal chord.  Okay, since we could still hear her sweet voice, it was okay.  The surgeon was worried because of the 2 incisions she had to have, 1 was in her neck and they had to thread new wires in-between her jugular vein and her carotid artery.  Apparently very tricky stuff that required 2 surgeons.

Taylor seemed to come through the surgery better then they thought.  We had planned to spend the night, but they let her come home.  However, her voice is gone.  What you get when she talks is a hoarse whisper.  No more cute Taylor voice.  Her surgeon seems very concerned.

It’s not like Taylor actually talked “real” words but she had a voice.  Now she doesn’t.  I kept trying to tell myself it’s okay because she came through the surgery when they were scared she wouldn’t.  But I think I’m in denial.

I don’t want to only hear this hoarse whisper from now on.  I want her voice back.  We asked if her voice would get better, but it seems the odds are not in our favor.  Furthermore, there could be a breathing issue down the road.

I would probably still not have written here tonight but The Bossman told me I needed to and as usual, he was right.  I can’t keep my head in the sand forever.  I need to just let it go and move on.  At least, right now, she’s home and happy.  That is what’s important…right?

Computer Avoidance

I can’t believe I’ve gone this long without blogging.  The only excuse I have is that things have been completely hectic and busy around here.

The business has been non-stop since October with several computers coming in every day.  So between doing tech support over the phone and dealing with customers dropping off or picking up, the last thing I want to do at night is be on my computer.

Also, after many years of dreaming about it, “The Bossman” is finally realizing his dream of putting up 10,000+ Christmas lights that will be computer animated.  Needless to say, in between customers I’ve been stringing strands of lights together or painting outdoor decorations.  Click here if you’d like to check out our progress.  We only have 1 week to go before show time.

On a pain in the ass note, Taylor visited the neurologist.  She started having drop seizures again…really big ones.  Well, today, we found out why.  Her VNS implant is not working!  If you don’t know of our VNS implant troubles, you can read about them here.

So that means another surgery and probably soon.  As her neurologist put it…”that’s a bunch of crap”.  Her neurologist is such a neat lady.  She’s funny too.  I love that.

Well, that’s what has been going on around here.  Doesn’t look like things plan to slow down anytime soon.  I do apologize for ignoring all my blogging friends and not commenting on your posts.  I’ve just been practicing computer avoidance for over a month.

There Are Still Some “Firsts”.

          I had to sneak this picture with my phone so she wouldn’t stop playing.

I spent part of the afternoon, sitting at my desk, looking out the big picture window, watching Taylor play on the deck.  i realize that doesn’t sound all that entertaining, but for me, it was.

You see, Taylor doesn’t “play”.  She has toys and stuff, she just never really plays with them.  About the only toy she really plays with are balls.

But today, Taylor took her Cabbage Patch dolls and a stuffed puppy and played with them.  She sat them in chairs around the outside table and put toys on the table for them.  She had several of her magazines placed in front of where “everyone” was sitting.

Taylor playing today would be the equivalent of a baby taking their first steps in how emotional it was for me.  At 21 years old, it looked like my daughter used her imagination for the first time.  It was amazing.

And yes…I cried.

Anti-PC Post Ahead…Proceed with Caution

 I realize that my voice is going to be in the extreme minority here but I feel like I need to say something. 

There are a lot of things that our lawmakers in Washington need to address…namely the fact that millions are out of work.  Our economy is still on a downward spiral.  Small business owners are being taxed like crazy.  I can vouch for the last one first hand.

Look, as the mother of a profoundly, developmentally disabled daughter, I understand the power behind words.  However, right now, taking the words “mentally retarded” out of government documents seems like a waste of Washington’s time. Click here to read the story.

There are too many families who don’t have enough food, enough money to pay their bills or house payments.  Shouldn’t we concentrate on those issues right now?

I realize that I’ve probably offended most, if not all, parents of special needs kids.  However, I just think there is a time for everything and maybe this wasn’t the right time.  We are so politically correct about everything…even to the point where sometimes I don’t even know what to “call” my child when explaining her issues to others.  You can’t say disabled, you have to say “differently-abled”.  Handicapped becomes “handi-capable”. 

These are just my personal views and I definitely don’t expect everyone to have the same.  I just feel that sometimes, people are too scared of offending someone with a differing viewpoint.  I almost didn’t post this because I was worried about what those that read here would think.  But then I realized that it’s my blog & if  I can’t voice my feelings here, where can I?

I welcome all differing opinions to comment here.  I just ask that you be respectful.  Dialogue & debate (with manners) are always appreciated.

Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule.

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.
That didn't run in your family.

Could this really be happening in your lifetime?
There's no such thing as a perfect body.

Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

This is something I ran across and just had to repost.  Sometimes you come across things that just beg to be shared.  This, to me, is one of those things.