Wednesday, March 23, 2011

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.

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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  What was once standard procedure when Taylor was little is now considered outdated.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…

taytay and linda 019

5 comments:

Becca said...

I've never felt you come across as a "know-it-all." You've always offered very sage and well-thought-out advice, that was very appreciated by me. :-) I so look up to the parents of the older children with Down syndrome or other disabilities, as there is so, so much to learn from them - disability issues faced in community, in school, in every day home life that we have not yet come up against. Thank you for all of that.

I'm so glad you guys could take such a blissful vacation!

((hugs)) to you and the beautiful Miss Taylor!!!

HappilyFlawed said...

Just in case you guys needed them I ibcluded you,taylor, and Bossman in my prayers at church yesterday!

Kathy said...

Hi, I follow this blog when-ever I can.

I can only speak to Aspergers' Syndrome. (High Functioning Autism.) Which isn't life threatening just a challenge.

I too, pray for Taylor, Boss Man; yourself on a regular basis; am so happy for you that Taylor has been part of your lives for so long.

I will continue to pray for all of you, as well as her caretaker sister.

I won't say this is a "cute" picture, because I can really see the family resemblance between Taylor and her sister. They are both beautiful young women.

hugs
kathleen

Lisa, aka AP said...

Dawn, never, ever have I felt you to be a "know it all" and hate that anyone has ever made you feel you are so. Your situation with Taylor is unique and, as such, you're in a position to offer ideas and advice many aren't. That should only be appreciated, and anyone who has read your blog for long would know that's how you intend it. That all said, Taylor has become a truly beautiful young woman while sill being your baby. You are a very lucky woman to have both. :-)

ellen charge said...

i just came across you i am a 26 yeahr old charger well will b on tuesday i have to say i love blog world you can connect with so many differnet disabilites i found you through another charge mum in fact i have charge syndrome i dotn think it matters weather you comme t or not i dotn commen t on everyones eather i comment on alot but not eveyrones some i dotn really have anything to say same with fb i follow many people with all kinds of special nmeeds to me the best is jsut reaching out and saying im here and im giving you a cyber hug coz i think you need it and for now i will give you a cyber hug and pls give ur sweet girl one fo rme to