Wednesday, June 30, 2010

Not Alone


2009 04 18_Fish Hatchery_0113

I know I need to do a better job of writing here but I don’t always want to write about bad or sad things.  Lately, my mind just seems consumed by the changes Taylor’s brain is going through & how it is affecting who she has always been & who she might become.

However, after reading  Joyce's blog, I know I’m not alone.  I hope she won’t mind the link to her and her daughter’s blog.  (If so, just let me know & I’ll remove it.)

That day of Taylor leaving me in the grocery store went from bad to worse.  My middle daughter Brandy, who is Taylor’s respite care provider, thought it might give me a break if Taylor went to her house for awhile…something she does a lot.  That day, she was acting so different & out of it that it scared Brandy.  It was like “Invasion of the Body Snatchers” & my Taylor was someone else.  Luckily, days end.  It’s too bad the fears & feelings don’t end with it.

I am happy to say that we have not had anymore of those really horrible days.  Is Taylor different than last month?  Yes, but it’s our new normal.  Just like her birth and subsequent medical problems became our new normal almost 21 years ago.

That’s something about our kids…there is always a “new normal”.  They are never consistent unless you count consistently changing. 

The other day, out of the blue, Taylor packed her things that she always takes to her sister’s house, put them at the end of the couch that looks out the window to the street and sat down. She sat on the end of that couch for several hours.  She had it in her head that she wanted to go to her sister’s house & nothing was going to change her mind.  We hadn’t planned on her going to Brandy’s but when I told Brandy what she did, she said she just had to come and get her when she was done with her other client.   She did come get her & Taylor was as happy & sweet as ever. 

I just have to brag for a minute.  My daughter is a wonderful care provider for those with disabilities.  I’m sure it’s because from the age of 5 years old, she grew up with a sister that had severe problems.  Brandy was the first one to make Taylor laugh & the only one for awhile.  My oldest daughter Courtney has a special bond with Taylor as well.  Unfortunately, she lives in Georgia with her husband & kids.

Brandy & Courtney, never once complained about the time I had to spend with Taylor at the hospital.  Taylor had a bad seizure when they were 11 & 12.  She stopped breathing & her heart stopped.  They did not panic.  I did CPR, Courtney called 911, & Brandy went to the top of the driveway to wait for the ambulance.  I have awesome girls.

I don’t know what I would do if Brandy hadn’t moved here to Oregon from Georgia last year.  Because of lack of  funding, the program that Taylor was going to do after graduation, she can’t do.  They can’t afford a 1 on 1 aide for Taylor and Taylor can’t be left to her own devices because of her health & seizures.  Brandy is sitting down with Taylor’s case worker and going to come up with some activities she can take Taylor to, so at least she will get out of the house.  The program does go out a lot to plays, swimming, movies, & the like so that’s something Brandy can do with her.

I don’t want her life to be reduced to being bored to tears every day.  Taylor is a social butterfly.  She needs interaction with people…lots of people.  So much so that right this very minute, Taylor is standing in the bathroom, looking out the window watching the traffic go by. *laughs*  She’s been standing there for the past 20 minutes.  Whatever makes her happy. 

Thursday, June 24, 2010

Still Shaking

Taylor marie Sutherland Graduates 036_edited-1       Not part of the story, but I wanted to share this picture Taylor’s sister took. 

It’s been a couple of hours and I think I’m still shaking.  I’ve been lucky in that since Taylor learned how to walk at the age of 6, she never really strayed away from my side or line of sight when we’ve been out.

However, since we’ve noticed the decrease in some of her functions, she has stepped away from my side but never really completely out of my line of sight.

This morning, all that changed.  She loves to go to the grocery store with me.  She always stands with me at checkout because she wants to make sure those food items that are specifically hers get put in bags.  God forbid we leave something behind.

This morning, I was busy running my debit card to pay, just assuming Taylor was right there with me as usual but when I was done and looked up, she was nowhere in sight.  My heart dropped to my feet.  I started calling her name and looking at the usual places she might go.  The deli ladies at the store know and love Taylor and so I thought maybe she walked over there, but no.

By now, I was panicking, thinking that as friendly as Taylor is, she walked away with someone.  I was crying, the clerk was crying (yes, Taylor is well-known & loved at Safeway…gotta love a small town) and the manager was helping me try to find her.

One of the stock boys saw us and said, “are you looking for Taylor”?  Yes, I know, even the stock boy knows her name.  Anyway, he said that Taylor was in the back of the store in the bakery section, looking at the freshly made bagels.  When I saw her, I had that mom moment where you can’t decide if you want to strangle your child or hug them to death.

I opted for expressing my displeasure at her behavior and holding her hand then hugging her while trying not to faint from relief.  I looked at her face and realized that honestly, she wasn’t all there.  She had this vacant, disconnected look on her face.  I think that scared me even more.

I’m hoping that it was just “a moment” and that it’s not going to turn into a regular occurrence.  Knowing that Taylor wasn’t going to wander off is apparently something I took for granted and now I know…I no longer have that luxury.

Wednesday, June 23, 2010

Taylor & Barney

cemetary 008 You know, I’ve realized lately that my last post didn’t quite start out the way I had envisioned.  I started off with the picture first, then the title.  When I started writing, well, you can see how that turned out so I do apologize again for a cheery title and then the downer post.

I try to limit those posts and I think that’s why I hadn’t written here for awhile.  I’m one of those bloggers who starts writing and then just lets go.  Sometimes, it’s not such a nice post.  I will say that Taylor is sick again with another bad case of bronchitis.  The doctor isn’t happy with Taylor’s increasing lung issues but I’m not going to write about that today.

Taylor started watching Barney when she was 2.  Yes, Barney the dinosaur is an oldie.  She quit watching when the show caved to all the criticism about how it was annoying for parents.  That kind of sucked for me because I can honestly say, Taylor learned more from Barney than she did from going to elementary school.

Oh how she loved those songs and learning all the motions.  She would drive us crazy, in a good way, to sing those songs with her.  You know, ones like “Apples & Bananas”, “Boom, Boom, Ain’t it Great to be Crazy, & “There Was a Hole”.  I’m not sure of the last title being correct but it was the first line of the song.

She really loved the Barney theme song and still loves to hear it.  One of her favorite Barney shows was the movie “Imagination Island”.  So the other day, when Taylor  spent the night with her sister, Brandy found it on Netflix and put it on the computer for her to watch.

Brandy had to call me so she could tell me that Taylor was going crazy with excitement.  She said she could hear Taylor all the way in the living room even with the bedroom door shut.  Of course, there was a minor downside.  Taylor wanted to keep watching it and at 11pm when she should have been sleeping, she was still laughing hysterically while watching it.

I’ve been thinking about trying to find the older Barney’s on Amazon and see if they’ve put some on DVD.  That might help with some of Taylor’s boredom now that she will only be out of the house about 3 or 4 days a week.  Maybe I can find this one too.  Taylor loved this show as well.

To say that Taylor has an eclectic taste in TV would be an understatement.  She loves “Blues Clues” and “Barney”, but you can still find her watching ESPN every day especially if there is baseball on.  She also loves “Sports Center”.  I don’t get where that one came from but then the inside of Taylor’s head is like sliding down the rabbit hole. 

She is my silly, loving, affectionate, car magazine loving, caffeine free diet coke drinking, cheese Ritz Bits eating, toy throwing in the bathtub light of my life. 

I’m thankful for everyday I can see her smiling face and get a slobbery kiss and giant hug from her…nothing better on the planet.

Thursday, June 17, 2010

Gummi Worms & an Update

Taylor & B gummi worms

        Taylor & her sister enjoying some gummi worms.

Update:  Sorry for using a happy title and then writing a depressing entry.  I put the title and picture in 1st with the expectation of writing a blog on the picture but somehow I got sidetracked.  I guess this needed to come out more than I realized.  Thanks for all the kind words in your comments.  They mean a lot to me.

Taylor graduated last Tuesday so that was her last day of school.  By this past Monday, the summer boredoms had set in.  She went from going to school everyday, to having to stay home.  She doesn’t start her new program at Sunshine Industries until July.

Normally she would have gone to her sister’s house a couple of days this week but my grandson is really sick with some sort of virus.  The last thing we need is for Taylor to get sick.  We are hoping he’s better by tomorrow so she can go over Friday and spend the night.

As far as Taylor’s health is concerned, well there are some issues that are going on with her brain.  We’ve noticed that for the past several months, Taylor’s behaviors have changed quite a bit.  Because she has so many seizure a day, we know that brain tissue is dying and we think that whatever part controls memory might have died.

Normally, if Taylor asked you for something, if you told her to wait, she would…for a limited amount of time.  Now when you tell her wait, she’ll ask again within 5 minutes.  It’s like she forgot she just asked.  Also, we’ve noticed a change in the way she “plays”. 

Now, while Taylor has always had the attention span of a gnat, it’s even worse now.  It’s like she’ll start something and then you see this look on her face like she forgot what she was doing.  It’s hard to explain.

We just know that Taylor is losing more abilities much quicker.  Sometimes I’ll watch her have so many seizures, one after the other and think, I need to call the neurologist.  Then it hits me.  Why bother?  We have exhausted all medicines and medicine combinations.  She takes 4 seizure meds right now.  We’ve also exhausted all surgical options.  Cutting her brain in half didn’t even stop the seizures.

I struggle with am I giving up too soon and do I want what could be her last weeks, months, years to be spent in the hospital.  I know that when she goes, I’ll second guess my decisions, wondering if there was some treatment I missed.  Deep down in my heart, I know I’m making the best decision I can for Taylor.  Right now, she is happy (except for missing school) and for her, the quality of her life is good.

Unfortunately, those second-guessing thoughts come at night, when my brain just keeps replaying every medical decision I’ve made over and over…wondering if somewhere, I made the wrong choice.

I realize that we as parents of special needs kids do what we think is in the best interest of our child based on what information we have at the time and the deep love we have for our children.  I keep telling myself that replaying Taylor’s life and worrying that I did something wrong is a waste of time.  Sometimes, myself doesn’t listen.


Wednesday, June 9, 2010

My Baby is a High School Graduate!

 Last night was a total mix of emotions.  Taylor loved wearing her cap & gown and she got a flower to carry in the procession.  Boy, she was all about that flower.

When her name was called and she went up and got her diploma, there were lots of loud cheers and applause.  We actually caught that on the video.  Even the people seated around us realized how special Taylor’s graduation was and a few of them were teary-eyed as well.  Taylor’s “boyfriend” Eric came to see her graduate and has a cameo in the video.  Also, during the singing, you can hear my granddaughter Ally singing along.

Yes, I was a crybaby, but then, did anyone really think I wouldn’t be?  I hope you enjoy the video.  The Bossman did an awesome job of editing the parts together.  There were some times when I had to stop to wipe the tears.  I ended up giving Brandy, my middle daughter, the video camera to get the important parts.

All in all, it was a wonderful night and I’m so very proud of Taylor.

Tuesday, June 8, 2010

Tonight’s the Night!!!


 In less than 2 hours, my baby will have graduated high school.  This is just a short post because I’m so full of emotions right now.

She was never supposed to survive her first year of life.  Then it was she wasn’t going to make it past her 4th birthday.  After that, she would never see her teens.

Now she is 20 years old and we are hitting a milestone we were told would never happen. 

All I can say right now is WOW!!!!  I hope to have decent video (without me crying) of tonight’s ceremony.  Wish me luck.

Until then, enjoy this picture of Taylor in her cap & gown.