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. 

5 comments:

Best~of~B said...

Just had to make me cry didnt you. I sat at Nancys next door for an hour and we got on the subject of self pity and nancy said she did that until she saw what you go through with Taylor and she just said that its nothing to what you have to do and that you are amazing. I know its hard but you do have me and I will always helps as much as I can. What you do is not easy and I cant imagine what its like even though I have grew up watching and help out now, just not the same as having to deal with it. I love you and your doing amazing,
Keep your chin up!!!

Becca said...

I had purposefully skipped that post by Joyce the other day. I sometimes feel a little guilty about wanting to stay ignorant of certain things. But this time I read it. I know it's something I have to think about, as much as it scares me.
Your girls are amazing, Dawn. Experts and famililes always say that having a sibling with a disability impacts children's lives in an incredibly positive way. Yours are no exception. Taylor's lucky to have such a close, supportive family.
I can't even imagine the thoughts you're having these days. You're a strong woman, but you know (and I know I've said this before) you have to get it out there - don't bottle it. Don't be afraid to post negative or sad things. If people don't like it, they don't have to read. For the rest of us, I think we learn so much from you. Hang in there, 'k? Hugs to Taylor!!

ANewKindOfPerfect said...

I truly appreciate your postings, as someone with an older child. My Peanut is only 6.5 years old, and I have no idea what to expect in the future. Reading about your experiences with Taylor breaks my heart at times, and warms it at others! Your daughters are amazing, you have done a great job of raising caring, compassionate girls.

I read about Taylor wandering off in the supermarket. I could feel your fear as I read it! My Peanut doesn't walk, but I could imagine the terror of not knowing where she was. I hope that doesn't happen again anytime soon!

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