Courage

I’ve finally found the courage to write this entry.  I struggled with writing it because I was worried about what some might think & I finally let that go.

I’m confident in the decisions I’ve made & I can’t let what others think scare me.

Taylor was diagnosed with chronic myeloid leukemia.  While this type of cancer is more common in older adults, it can happen at any age.  The oncologist believes Taylor developed this type because it involves issues with the #9 chromosome and Taylor has Trisomy 9p.

We are not exactly sure what stage Taylor has because we are not going to do a bone marrow biopsy.  The reason for not doing one is that we are not going to seek treatment.

I’m sure there will be people shocked by that.  I follow the blogs of some DS children being treated for leukemia.  However, we don’t feel it’s in Taylor’s best interest to put her through chemotherapy.  I’ll admit to being scared when I shared that decision with the oncologist but he was surprisingly understanding & sympathetic.  He actually agreed with our decision.

Taylor has many other health problems and we’ve been told that she’s already outlived the expectations of all her doctors.  I want whatever time Taylor has left to be happy.  All her doctors believe that the side effects from the chemo outweigh the benefits of putting her through the treatments.

Believe me when I say that there was a lot of thought and research  that went into the decision that we made.  Right now, we are treating any symptoms that might make Taylor uncomfortable and her doctors are on board with that. 

I know in my heart that we’ve made the right decision and the best decision for Taylor.  Of course there is that part of me that wants to do whatever it takes to keep Taylor here with me.  But how selfish would I be to subject Taylor to being sick & unhappy just for my benefit?

I’m sure there will be people that think I’m doing the wrong thing.  I would ask those people to keep in mind that they don’t know Taylor’s medical history.  They need to understand that the decision we’ve made is made with the love we have for Taylor.  I love that girl more than I could ever put into words but I have to do what’s best for her…not what’s best for me.

Right now, we are focused on keeping Taylor happy & comfortable.  Taylor is surrounded by the people and things that make her happy & fulfilled.  She has her diet coke, car magazines, computer filled with Barney videos, grapes, & her TV .  Sounds like the perfect life to me.

Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.

 

Life At This Moment

I’ve been gone for quite awhile.  Life just got busy.  Of course, then unexpected things started to happen.

As you can see from the picture, Taylor’s port is accessed.  She just spent 16 days getting daily infusions of IV antibiotics.  We just finished Sunday.  She was being treated for a staph infection of her foot/leg.

Unfortunately, while we noticed some improvement initially, her foot and leg are now right back to being big & swollen. 

Then Taylor’s blood work started coming back abnormal and the “C” word was thrown out.  That’s where we are now.  Running tests for cancer.  Tomorrow morning, we have a bone scan.

Taylor has been very lethargic and clingy lately.  She follows me around the house.  Normally, she always does her own thing, plays her own way.  Now, I have an intense shadow.  You can tell she doesn’t feel well, but it’s frustrating that she can’t tell us what exactly she is feeling.

That’s where I’m at right now.  Trying to start the thought process of whether we go with chemo/radiation option, if the tests confirm what the doctor suspects, or to not put her through those things.

I’d like to not have to think about any of that.  I’d like to be able to wait until we know for sure.  But then the doctor reminds me, depending on the results, we may not have a lot of time to make a decision, so I need to start thinking about it now.

How do you make those decisions?  Why do you have to make those decisions?  At least I can always count on this smiley face to help me make whatever decision needs to be made.

The “Bossman” told me I needed to update this blog…to get my feelings out.  As usual, he was right. It is cathartic to put things out there in writing, even if I haven’t quite dealt with all the emotions yet.

**After posting this, I happened to look at the pictures, and she definitely looks unwell.  First time I’ve noticed how pale she is right now.**

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.