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.

 

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*

Happy 21st Birthday Taylor Marie!!!

Taylor helping decorate her cake @ preschool for her 3rd birthday.

Wow!!!  It’s hard to believe my baby is 21 years old.  While she doesn’t act 21, I’m amazed at how far she has come.

She exceeded the doctors’ expectation of how long she would be here.  How many times were we told she wouldn’t live past a year old?  How many times were we told that this “event” is probably the end?

She doesn’t know she isn’t supposed to be here.  She’s stubborn.  While that stubbornness can be difficult when dealing with a 6ft. tall toddler…that same stubbornness has made her determined to live her life to the fullest.

So keep on being stubbornness Taylor!!!  We love you like crazy and Mommy needs you to hang around!

HAPPY, HAPPY BIRTHDAY PRINCESS TAYLOR!!!

Hair Washing Hell

I wonder how many mothers of special needs kids have the same problem I’ve had since Taylor was a baby.  She hates having her hair washed.  It was worse when she was a toddler.  She screamed so loud while I was washing her hair, the neighbors called the police for a “well-being check”.  I mean seriously?  She hated it that bad?  Oh she loved and still loves taking a bath, but get out the shampoo and she’s no longer a happy camper.

Fast forward a number of years and I’m a single mom working in the children’s shoe department at Nordstrom.  I work long hours.  By this time, my oldest daughter Courtney lives down the road and is expecting my first grandchild.  She watches Taylor for me.  Does Taylor cry when Court washes her hair?  Hell no!  I would do the exact same thing Court would do, and Taylor would still throw a fit.

Fast forward to now.  Taylor is 20 years old and still cries when I wash her hair.  Now granted, she did have brain surgery and does have a scar across her head from ear to ear, but I don’t think it bothers her much.  When she goes to my other daughter Brandy’s house, she even let Brandy blow dry it and use a flat iron on it.  Do you think she would let me even plug in a flat iron in her presence?  I don’t think so. 

The school would send home notes some days that Taylor’s hair was so cute.  I would have to send a note back saying if Taylor’s hair is cute, I didn’t do it, her sister did.

This has to be a “mom” thing.  You know, kind of like when your kids are so good at other people’s house and you wonder why they are monsters at home.  She must sense the fact that I’m mom and she’s supposed to cry if I wash her hair.  She grew up tactilely defensive but after several years of therapy when she was  young, that seemed to go away…except with her head.

Yeah, I know…kind of a silly post but I’m just wondering if anyone else has a similar situation.  On a good note, we got a really great swing for our deck on sale at Wal-Mart and boy does Taylor love it.  She’s been going out there everyday with her music and her magazines and just chilling.  I think that was the best spent money ever.

Happy Birthday Taylor!

Taylor turns 20 today. I've learned a lot more about medical issues than I ever wanted to know. I've shed more tears in the 20 years than I ever thought possible. I've spent more nights in a hospital in the past 20 years than I ever thought possible. When you add the total number of nights that I've spent sleeping on an uncomfortable, vinyl pull-out couch in a hospital room listening to the beeping of monitors and IV pumps, it totals over 3 years out of the past 20.

However I'm not going to talk about that today. I'm going to talk about the smiles she's given me. No matter what problem comes up, Taylor smiles through it all. I've seen her fight to re-learn how to walk and talk (well Taylor talk) after suffering a stroke after brain surgery. She wakes up in the morning, smiling. She is the most loving and affectionate "child" I've ever known.

Taylor is funny, silly, happy, loving, strong, resilient, and stubborn. She has been the major focus of my life for the past 20 years. People around town know me only as "Taylor's mom". She has touched the lives of a lot of people.

To me, Taylor is hope and I choose to celebrate the good today. Happy Birthday precious girl! We love you!