tag:blogger.com,1999:blog-82540728951829644652024-02-20T00:13:05.411-08:00An Unexpected Trip to HollandDawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.comBlogger100125tag:blogger.com,1999:blog-8254072895182964465.post-27721972446811412242012-01-05T13:46:00.001-08:002012-01-05T13:49:16.330-08:00New BlogI've decided to take a picture for each day of 2012 and blog about it. The pictures will be a reflection of what is going on in my life on that particular day. If you'd like to follow along on that journey, just click<a href="http://dawnsensephotos.blogspot.com/"> HERE</a>Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com0tag:blogger.com,1999:blog-8254072895182964465.post-60296135408460924112011-11-17T14:52:00.001-08:002011-11-17T14:52:11.802-08:00An Example<p><font size="4" face="Segoe Print">We’ve always said that when Taylor runs, she lopes like a camel.  Her sister Brandy sent me the perfect video to show just how Taylor runs.</font></p> <p><font size="4" face="Segoe Print">Please enjoy!  I know I’ve laughed & laughed & I’m laughing now as I type this.</font></p> <div style="padding-bottom: 0px; margin: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: none; padding-top: 0px" id="scid:5737277B-5D6D-4f48-ABFC-DD9C333F4C5D:c9d88fa5-cb7d-4104-8b43-8403615ed8da" class="wlWriterEditableSmartContent"><div id="11544e8d-4680-4a38-9aab-a6d25937c8c0" style="margin: 0px; padding: 0px; display: inline;"><div><a href="http://www.youtube.com/watch?v=ZIOBTCBHyAw&feature=youtu.be" target="_new"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI38uVF3pdZgukEO7q0mulKp8IWV6kj-F39y91aiPPICHm7QfNAhXz6JIG2HEiOp8DLJ_aZ7kLUt-F4OJrAkxc0kaL-MKOPoAGySXRglg56Suol8uRyPe_uhZsFo0wLXn-Hrl4ste3Uws/?imgmax=800" style="border-style: none" galleryimg="no" onload="var downlevelDiv = document.getElementById('11544e8d-4680-4a38-9aab-a6d25937c8c0'); downlevelDiv.innerHTML = "<div><object width=\"387\" height=\"217\"><param name=\"movie\" value=\"http://www.youtube.com/v/ZIOBTCBHyAw?hl=en&hd=1\"><\/param><embed src=\"http://www.youtube.com/v/ZIOBTCBHyAw?hl=en&hd=1\" type=\"application/x-shockwave-flash\" width=\"387\" height=\"217\"><\/embed><\/object><\/div>";" alt=""></a></div></div></div> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com1tag:blogger.com,1999:blog-8254072895182964465.post-21593879721799104382011-10-04T13:02:00.001-07:002011-10-04T13:02:01.372-07:00Sometimes It’s Hard<p><font size="3" face="Segoe Print">Sometimes it is hard having an older “child” with special needs.  I will admit that there are times when I wish I could turn back the clock.  Granted, they are few and far between, but if I’m honest, I do have them.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt_e2OMLL_LbGlaRWXEQP7kVgdzA14yAsn0lsKWVs-dfFCp4Y4dhTv7k4G0itppkAdQJ6TPcs7GWfeb-RG-Iw7jIQtEOPabJVImbRRTPVjBzdOyMcNUryzm0Pig_UhWThRkuV_VzYXFZA/s1600-h/Taylor_0001%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Taylor_0001" border="0" alt="Taylor_0001" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYE08s3TgV4F7jPhhCmfbTSju3l7d5voVYMFGuV2sImuyT3kBLIJXww3HQSPXwYq5J8paUJfFj38MsjTEFgshYuv9sAETxS6k0kZwP1iHsdzOBjgTfqP28uxyveIz2-3rCqKVkiZt5tss/?imgmax=800" width="393" height="278" /></a></p> <p><font size="3" face="Segoe Print">There are things that are easier when she was smaller.  She still has the mind of a toddler in a 6 foot tall frame.  She loves to swing, but the trend today is to take out all the old style swings and put in big play structures.  I watch her struggle to figure out how to play in a world that is too small for her.  It breaks my heart.  </font></p> <p><font size="3" face="Segoe Print">When we would go to the grocery store, so many would stop and say how cute she is.  Now, it’s mostly stares of disgust because she still drools.</font></p> <p><font size="3" face="Segoe Print">No, it’s not all bad.  We live in a small town and shop at the same Safeway.  All of the people who work there know and love Taylor.  There are cashiers that tell me she lights up their day with her smile when she comes through their line.  I love those people.</font></p> <p><font size="3" face="Segoe Print">I’m not trying to write a whiney post but these are just things that are on my heart lately.  I used to belong to an online support group for Trisomy 9p.  I eventually stopped posting and left the group because there was just no connection with the other parents for me.  </font></p> <p><font size="3" face="Segoe Print">Taylor is one of the oldest, still living, T9p kids.  She also has a lot of medical issues.  She was also one of the most profoundly developmentally delayed.  The parents of the younger kids didn’t want to think of their kids being as affected as Taylor.  I understand that perfectly.  They didn’t want to hear about seizures & cancer.</font></p> <p><font size="3" face="Segoe Print">Another mother who’s daughter is Taylor’s age also left the group.  She felt the same.  The other big issue is school and/or programs.  Taylor loved school but she can only go until she turned 21.  Then they graduate them.  Most of her class went on to work programs.  That’s not an option for Taylor.  There are really no options for the profoundly affected “kids”.  </font></p> <p><font size="3" face="Segoe Print">Right now, Taylor is bored.   She wants so badly to DO something but because we run a business from home, it’s not possible.  She does get her respite care but right now, that’s a problem.  Not because of her care providers…they are awesome people.  But because of the brokerage firm that handles money & paperwork.  I’m switching firms so hopefully, this will resolve the problems.</font></p> <p><font size="3" face="Segoe Print">I know this sounds like a complaint blog and I apologize.  I just needed to get it out.  I guess I just want to help other parents because I’ve been through so much in the past 22 years.  I just never know if the parents want to hear what I have to say.  </font></p> <p><font size="3" face="Segoe Print">Eh, I definitely sound whiney now.  I’ll take a cue from my happy-go-lucky child and just smile <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjOjAxfE7VlBcVaebF1EgxuNZ50DFQ-0QXz4DxQRkX4twS9hgEn_xswTEt25qWECyT5QzZrqFW2ObZEtO88tgOMwAqRKKPLFlValHrXUcLt-zien601uzp6yFLHxWhzGEQPK8UtRS0yqo/?imgmax=800" /></font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW_oX9yJMkBEs6CPtUqJR-RpW2vrjQ_8I01l6u_0EehSsvQcXmn6svjyVXBUm2il2NZjI3bN7sl6DsUMokVoYG62LziNCE2Eu3IDpigK8TB6y3hTtcsaQTKXQJ1MyQG_omE-95QJ6OG9s/s1600-h/Christmas%252520067_edited-1%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Christmas 067_edited-1" border="0" alt="Christmas 067_edited-1" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX6K_ZQy2MPbhE0UA2oFmt510nm3Ng-5S8b39P8Qa8ctEQ4TzX_tMhKy0OTry70O7JVaNOjscI5bcZBrlNh-OrRtX3lg45wIx0bwa9W4FWdutkG3UrUhHBuiEeg38QYX9b2tp-bN_mKjw/?imgmax=800" width="314" height="400" /></a></p> <p><font size="3" face="Segoe Print">An older picture, but one of my favorites.  She’s so stinkin’ cute!</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com2tag:blogger.com,1999:blog-8254072895182964465.post-6794275843068116002011-09-26T13:13:00.001-07:002011-09-26T13:21:32.042-07:00An Update on the Mom<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6tyTrXnSStwRzy_DyNPkjG2IT_BqtDAGEwSHEwRMwiqL_6cEW0FvY1Nu3EO3ZQ8euykAdBEDa28p_ldzkYJ4ntZUrjGz27jHnlDCvJ6YOH98jchbQihyh5S3Nnbx6-ZW81yHW_CSmRtI/s1600-h/Coast_2008%25252003%25252030_0289%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Coast_2008 03 30_0289" border="0" alt="Coast_2008 03 30_0289" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDlQ6lHifkbXr_RJGVCVUe1NdfgpS1P6l07ZJ1aqtdohST49X5xSZcO5ioq4in97cSdRrbyDg_eYq8ZHkMUjhZPaqv5seFXpHAlAUzGr8Hlpjqagzu6k-heEobBN8OO2hBMGEqyghfNlI/?imgmax=800" width="469" height="360" /></a></p> <p><em><font color="#595111" size="4" face="Pristina">This picture is an older one, but it brought back some awesome memories and I needed that. *laughs*</font></em></p> <p><font size="5" face="Pristina">Okay, so normally, I don’t post about myself unless it relates to Taylor, but I suppose I need to change that up a little.  What affects me, affects her.</font></p> <p><font size="5" face="Pristina">So, last week I spent some time in the hospital for pneumonia.  Needless to say, I’m still feeling like crap but trying to do that at home.  I had to make a repeat visit to the ER on Friday for IV steroids, but got to come home.  </font></p> <p><font size="5" face="Pristina">Is it just me or is it all us special needs moms…I tend to take my health way less seriously than I do Taylor’s and that isn’t really the right way to be.  If I’m not healthy, I can’t take care of her but sometimes that just doesn’t translate into practicality.  Please tell me I’m not the only one! *laughs*</font></p> <p><font size="5" face="Pristina">Taylor went and spent some time with her care providers while I was inpatient. She enjoyed that.  They have a dog.  See…Taylor is the ‘dog whisperer”.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAuTzjhtXxAA5CZogxU7ojqOPdi5F1S53BrZNpsxTb6fPh7I7aJ7RFPIQnlsHwrf-y4P5UT4heV3RvwJBmv_WqO2O_1XHuM0wzT814QKvpyQu6DXWbSJ5g75vFWtwhxLtS43JjQuF8CwU/s1600-h/668779717_2391325118_0%25255B4%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="668779717_2391325118_0" border="0" alt="668779717_2391325118_0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE6KegpcGZTPjRD2AKB1KTLCBVbAp74qS2ix-HMfEhrka44esVtT-pR04xKaPOMWI3-6bY-VCXEa3G0P-XmnscdAXHiaWkXTce5EF6IdIw2Wm8Cx1TIDZjApsEU65aWMX4sDi4Yu9c8mY/?imgmax=800" width="350" height="269" /></a></p> <p><font size="4" face="Pristina"><em>This is 1 of the pics she sent via text to my phone while I was in the hospital.  </em></font></p> <p><font size="5" face="Pristina">Apparently Taylor doesn’t like to sleep at their house.  She’s too afraid of missing something.  She is up and down all night.  When she comes home, she ends up taking a several hour nap and/or going to bed at 7pm then waking up around 10am.  Either way, it works for us and they don’t seem to mind.  I love these people!!!  </font></p> <p><font size="5" face="Pristina">As a side note, I hate, hate, hate the brokerage service that we have to deal with for Taylor to get respite.  They are being *&^%$heads.  But I’m changing firms, so hopefully, it will work out.</font></p> <p><font size="5" face="Pristina"></font></p> <p><font size="5" face="Pristina"></font></p> <p><font size="5" face="Pristina"></font></p> <p><font size="5" face="Pristina"> </font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com1tag:blogger.com,1999:blog-8254072895182964465.post-34059901828141631022011-09-16T12:55:00.001-07:002011-09-16T12:55:01.308-07:00Throwing Tub Toys & a New Haircut<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3GOLUPtF08DFDYz21Am7jwXSgvjJYlpUH_vTYxOoJ8jv3UdYet1W7xX8NwNs7NL-llbbaxIjTrTdNxNq4hVM9kibXDJ6HMAt7IwB2-u7LK68sV7nJSHoKs_rYmWtcg5_Nkmn38xCGlhQ/s1600-h/Bank%252520pics%252520%252526%252520Taylor%252520haircut%252520005%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Bank pics & Taylor haircut 005" border="0" alt="Bank pics & Taylor haircut 005" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8vyrNRfuCre3MgbGUP3VXVNa9lrrBHIAFViki7wYDtw98Fo3_7S3P5ISx30y9jUajsT7AahzWbQB7rvp0AGSGN6mw21H78S1k1yRATHQUy0x4nGCY78r9HR-F3jPz9j0ad7GkUq71-p0/?imgmax=800" width="335" height="316" /></a></p> <p><font color="#595111" size="3" face="Kristen ITC">Taylor got a new haircut yesterday.  I think she looks cute.  Also, no more struggling with her to put it in a ponytail first thing in the morning so she doesn’t have food in it. *yuck*</font></p> <p><font size="3" face="Kristen ITC">I realize that it’s a little odd to take pictures of a new haircut while the person is sitting in the bathroom floor.  However, this is Taylor’s “office”.  Every day, she takes her work equipment, aka bucket of tub toys & mp3 player, and heads off to work.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGMsCckhifZYLZVxOSyXH5hS2lITt4bZLB5JCavkiMIIWIhM-MTG0gAnwyQwW89ybO29_kHUbaKIwQ6z8Cd0HkU2PUXoxIit500lsqp_M2-iTqIRAmOpN2MHsrc_-cBTCo3pjnj_McJjo/s1600-h/Bank%252520pics%252520%252526%252520Taylor%252520haircut%252520006%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Bank pics & Taylor haircut 006" border="0" alt="Bank pics & Taylor haircut 006" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkO-_TKGEFWjEqUqkJykDwoQqUaWuwvCYt-CoD1TD96B0-3hZQa1H1CeJ0ShtE9gd3IHznTkYsdBQTldPhO3dmEIQYMayYFpXnB-UzJNT7Xa8tuxqUnnOm40z7iixhrMHwN98W-GBil84/?imgmax=800" width="389" height="299" /></a></p> <p><font color="#595111" size="3" face="Kristen ITC">She then proceeds to throw said toys over the shower curtain and into the tub.  That is the sound we get to hear all day…plastic toys hitting and bouncing all around the cast iron tub.  Keep in mind the fact that this is a 1 bathroom house.  So anytime we need to use the bathroom, we have to wait while she gathers up her work materials to take with her.  You better not wait until you really have to go in this house.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGPU2I4iLeZk0n1R2XOsRqiZDMN6ukE1IVQF5Z6gLVT4W9GyHUM6dUNqb4Ooia9kzQcZ0xTtMsrjNCh_ZcWTCuV_jCpTDKA01mIq4rjBDT6b74aTrGjvTywa8lJfAkvGr_kQPUfq9CToY/s1600-h/Bank%252520pics%252520%252526%252520Taylor%252520haircut%252520008%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Bank pics & Taylor haircut 008" border="0" alt="Bank pics & Taylor haircut 008" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3SNDnf7Zhrxa6Wsofo0pVTVf7c2yYVytLRgRPZpkeXF3UcU0aCtMRDkn4OQxpo0jaA7R35dXObLEtq8xkw8dJbZ1jqftNAuIEkuZZViv-ecpkc5E7JExKV6qjcJWgGUtdcc0tdr3-8DU/?imgmax=800" width="404" height="311" /></a></p> <p><font color="#595111" size="3" face="Kristen ITC">Taylor takes her “work” very seriously.  </font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjNaIW_vwzm4BCLHvNEMDOn72ChwuWQMgjqUkPNw9JvFiRv2ZNhjoKS9cbwBbpwSNAi9jyCqEu2UESOfFg3zNxucyzhtJcLb_5TtDCVI4XgNrbpJplPasdBYwjlVAiK8ytnwAy_uooAzY/s1600-h/Bank%252520pics%252520%252526%252520Taylor%252520haircut%252520010%25255B9%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Bank pics & Taylor haircut 010" border="0" alt="Bank pics & Taylor haircut 010" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIgcaTVTiIe5W0JhYxQh9mkX5ZP9Ime6bOHIl8hjLZG8-pUOj_bH7rdNZoG1tenVTknLSJacNjtAy4IW5Z_P64gV40fZ_DKiFaaICJvdzlLpZk4QcXCKP-BA06eqMOECKW-6-wG9TuOxg/?imgmax=800" width="408" height="314" /></a></p> <p><font size="3" face="Kristen ITC">It wouldn’t be a good post, if I didn’t end it with a smiling Taylor picture. <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtO6gBfrkPMj8HekHHANFgRl3-flrITdFQMRbauXJCDjJEcNib-3dLQu3nwcUkEi_tItHx_g2dj7QAiete2QRo7iVs1DKV4-mKbMVnfc1suQLW_Mo7SAI68plc_qJZrWJa_B9OeBk-QfY/?imgmax=800" /></font></p> <p><font size="3" face="Kristen ITC"> </font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com6tag:blogger.com,1999:blog-8254072895182964465.post-74121173725018443052011-09-07T21:36:00.001-07:002011-09-07T21:36:04.525-07:00Respite Care Rocks!<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMEo5MzBlMKTsKr9GGGVapu1Zvomkn91yX3nbHsrihP8PUjRaEX_BpWlnTVaJp6kLRI-mpkIrAEBtcwr5TVab7ke_O1FQ-K482qUtiaLnPP0jxz-mkvRCb__f36NII4CUKe_6eA5Ubwcs/s1600-h/056%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="056" border="0" alt="056" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7TBEqcBzXFtxnBei21gu9O1LjiqsX3BtkWTF_A3qrq8BnJ1PEMlQx0soSgYHFvJ_d6Cy62LywTMT3zZErRePDuEGHQNB_pybmHxdmaufS34busA8W4o-eFlEKvwXNUJnGENPkocvo3fk/?imgmax=800" width="341" height="461" /></a></p> <p><em><font color="#595111" size="4" face="Pristina">Taylor last summer.  A time out chair big enough for her *laughs*</font></em></p> <p><font size="5" face="Pristina">Since Taylor’s sister got married and had to move, we’ve been without respite care.  It’s hard to find someone you trust completely to keep your child overnight.</font></p> <p><font size="5" face="Pristina">Luckily, we were able to find those people.  One of the nurses at the infusion center Taylor has been going to since 2007 offered to do it.  She loves Taylor & Taylor loves her.  She thought it would be good for her kids to be exposed to someone like Taylor. </font></p> <p><font size="5" face="Pristina">So, for the past several months, Taylor has been stuck at home day in and day out.  Since we run a 9 to 5 business from our home, it’s hard for me to get out and do things with her.  So she has been bored and boy can you tell.</font></p> <p><font size="5" face="Pristina">She would just meander through the house with her bucket of tub toys…trying to decide if she wanted to go throw them over the shower curtain and into the tub ( a favorite loud past time) or take her mp3 player out and lay on the swing.  Another loud past time if you have ever heard Taylor sing.  Think 100 cats being run over by a car simultaneously. </font></p> <p><font size="5" face="Pristina">She would also make 500 trips to the bathroom every night to make sure nothing fun was going on in the evening without her. Anyway, last week, all the respite paperwork was done and the family came to pick Taylor up for 3days/2 nights.  I wanted to run around the house yelling “free at last, free at last, thank God Almighty, I’m free at last!!!!” (Didn’t…but wanted to.  Taylor probably would have done that if she could talk)</font></p> <p><font size="5" face="Pristina">Apparently she had a blast.  She attached herself to their 10 year old daughter Ally, who enjoyed the attention and gave one of their dogs more love than it probably ever wanted.  She came back a whole new girl.  She walked in the door, had a snack, then took a 3 hour nap.  Got up to eat dinner and then went back to bed until 10am the next morning.  </font></p> <p><font size="5" face="Pristina">She has been happy and good every day since then.  No getting up a thousand times a night either.  That little break from home did that child wonders.  People should never underestimate the awesomeness of respite…for both the parents & the child.</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" style="border: 0 !important; background: transparent;" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com2tag:blogger.com,1999:blog-8254072895182964465.post-17530129250179649612011-08-26T16:06:00.001-07:002011-08-26T16:07:51.945-07:00One of These Feet is Not Like the Other…<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBFhQO2k4B2mmgICm7QsIGnrDTPiXETHuTJ_YvCXUNEW882UkFNJXGPEfttBSM1CBwudM9kikJOSXr5EhlJ_3XiWbaOyIaVjDzVVlGVkZ-_aNNkooxsJPY5dsVhsWB_nXFP3OueVgXk0g/s1600-h/Parade%252520%252526%252520Taylor%252527s%252520foot%252520015%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Parade & Taylor's foot 015" border="0" alt="Parade & Taylor's foot 015" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_yDscL1ZqN-eSfTKmLJbBx7Gpm9p_RLfsEhR8S5ItFWVHIwSNvuXIjziwVsl0iTs3_78c7_mSEk_sOsZmLC52mqhIrO_CMv5huClGezqJr499DrgNgMWIDGAdf3hk6L4yjdDxg5ZQpf0/?imgmax=800" width="416" height="320" /></a></p> <p><font size="5" face="Gabriola">So, this is the “infamous” foot that started us down the road to diagnosing the <a href="http://www.lls.org/diseaseinformation/leukemia/chronicmyeloidleukemia/" target="_blank">CML</a>.  We’ve been through 16 days of IV antibiotics, bone scans, ultrasounds, dozens of x-rays, & several different doctor specialties telling us they didn’t know what it was.</font></p> <p><font size="5" face="Gabriola">Everyone agreed that this had nothing to do with the CML.  So we were just treating her pain when she had some.  This morning, she woke up in a lot of pain.  I tried the Ibuprofen first…nothing.  I called the doctor and then gave her stronger pain meds and she became more comfortable but everyone felt she needed to be seen.</font></p> <p><font size="5" face="Gabriola">However, Taylor’s doctor isn’t in on Fridays.  Also the only appointment they had was with the NP.  Now I love this office.  All the nurses love Taylor so I know they have her best interest at heart.  The nurse on the phone said, “Dawn, I don’t want to offend you, but it really wouldn’t be fair to have the NP see Taylor because she is just too complex and she’ll scare the crap out of the NP”.</font></p> <p><font size="5" face="Gabriola">Okay, I’m so not offended by that.  I totally get it and I just had to laugh.  To me, that sentence was funny.  Of course, that could just be twisted sense of humor. </font></p> <p><font size="5" face="Gabriola">So off we go to the Urgent Care because they know Taylor just as well.  (I used to have this secret fear of being labeled a drug-seeker because we ended up in the Urgent Care so much.) The doctor actually laughed at me when I told him that.  </font></p> <p><font size="5" face="Gabriola">Anyway…I’ll stop rambling.  I’ve written all of that to just say this.  Her last x-ray in May showed no bone abnormality.  Today the doctor said that the leukemia can weaken bone so he wanted an x-ray.  Lo and behold, she has a slight <a href="http://arthritis-symptom.com/fracture/ankle-fracture-hairline.htm" target="_blank">hairline fracture of the ankle</a>.</font></p> <p><font size="5" face="Gabriola">Seriously? The treatment is an ankle splint that she does not want to leave on. We don’t want to put her in a cast because then she would lose her sacred bath time.  That girl loves her baths.  </font></p> <p><font size="5" face="Gabriola">I’m not upset right now but I’m sure at some point it’s going to hit me and I’m going to be upset that she has to deal with all of this.  I will end this entry with a happy Taylor picture.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXoLBzHPapN18GGJH-8FTxk3b2Gje9mtR1PLCgvTB5gjuiyiya9O7UR3vWqmaBomnZzMzOgnkG9pQmQtnvUhnwd21H0SfyISfKSeCu1Ie7KovyIz40sQgUayK-La-5u3RhJ2LbIx94SMI/s1600-h/Taylortrain%25255B4%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Taylortrain" border="0" alt="Taylortrain" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpcHf0DlLnHbHMH8eFwqRIs8hF4dR3SFZTN6BWf1iPP0wZKppnIwFGIXyJwL4_l9nzNqKq7GvIGHhkP1oksGAwanzzNk2oSaf-apQ89tMLbvvP5PuNKBK4_PpflPyvNeSoqYCt9yyqXhQ/?imgmax=800" width="396" height="314" /></a></p> <p><em><font size="5" face="Gabriola">Taylor at her sister’s house (before she moved).  She  is <a href="http://www.youtube.com/watch?v=Sh1ZeWhAtRI" target="_blank">singing this song</a> from Barney.</font></em></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com2tag:blogger.com,1999:blog-8254072895182964465.post-40220085357532108492011-08-18T12:48:00.001-07:002011-08-18T12:50:28.349-07:00Happy Birthday Sweet Girl!<p><font color="#595111" size="5" face="Pristina"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-mUvF5y_2bxxYcm86AgPtx1L1tK9isGodYHBB5R1KuuBOrSuLLYL04XAmp0QXUCL2uOZc6L02Quk0hTMU3vRTsd6aFSQcpfjnR-E5vTUbjbUB7wv-ArdiExGG9VQzAxEsopU_T_SPLo/s1600-h/Taylor%252520infusion%252520011%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Taylor infusion 011" border="0" alt="Taylor infusion 011" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggljf-CrKT9s0dlu3bwRxay9XSwQxZL8yUeU3U6d1U1GAjP0MM02PqHTs7EXzgr9A_nZZL9vhRKHFBPQehClPdK6exuJ5Y3LtulX-_avaPXbx_7X424cdWBSNcxB0kUcnvyJ5kj1un4TA/?imgmax=800" width="391" height="301" /></a></font></p> <p><font size="5" face="Pristina">Taylor is 22 years old today!  It’s hard to believe that there was a time when we were told she would never see toddlerhood let alone her twenties.  Of course, she is a 22 year old “toddler” so I guess it all evens out. *laughs*</font></p> <p><font size="5" face="Pristina">I see each birthday now as a gift.  I feel so blessed to see her smiling face each & every morning.  Well, the mornings when she decides to stay up until 3am while making 5,000 trips to the bathroom are ones when I’d prefer to see that smile a little later than 7am.</font></p> <p><font size="5" face="Pristina">So, what do you get a girl who has everything she wants?  You give her the things she considers to be the best stuff on the planet.</font></p> <p><font size="5" face="Pristina">1 car magazine – $6.00</font></p> <p><font size="5" face="Pristina">1 caffeine free diet coke – $1.69</font></p> <p><font size="5" face="Pristina">2 packages of Gummi Worms – $3.00</font></p> <p><font size="5" face="Pristina">3 Mylar Spongebob balloons – $10.00</font></p> <p><font size="5" face="Pristina">1 huge grin & a drool enhanced hug & kiss =</font></p> <p><font size="5" face="Pristina">                                             PRICELESS!!!</font></p> <p><font size="5" face="Pristina"> </font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com6tag:blogger.com,1999:blog-8254072895182964465.post-23146636348113945252011-07-30T15:06:00.001-07:002011-07-30T15:06:53.683-07:00Pictures<p><font color="#595111" size="5" face="Pristina">Here are some pictures of Taylor from her sister’s wedding in May.  She had a blast.  Please excuse any pictures of me.  My face looks funny because I was constantly trying not to cry…both from happiness & sadness.</font></p> <p><font size="5" face="Pristina">Happiness that my family was gaining an awesome son-in-law.  Sadness because I knew he was being stationed way back in Georgia, at Fort Stewart.  I miss them a great deal.  No one to call me Nana in person anymore. <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-sadsmile" alt="Sad smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNdwRdKUAY4s78smXPVV9cBO0gNp_QdszwmB6c9dvRbIA7F76SpsYQPf0Jfbz0LM-TKdgEsae2d0Ci6IEOglmGLI4AwKknoRhsfRuyK5YkJP3mX6Fvdn_B5kfZkgqH2JB3Ec-moqIPLk0/?imgmax=800" /></font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn_t7eHE09N2p4vMMnppG55fxQ9ovPNTZ7xjMv5ZoeyMJ0rTir9XczSdCul84-okVhlc43V9apY3mZQYXuW3KuL8YdTutG3e0BDyb7vIQ9oy8AyvQG1YAryOhuOQgyWSt3xyfTxg_2WEk/s1600-h/2011%25252005%25252021_Brandy%252520%252526%252520Gary%252520Wedding_0081_edited-1%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="2011 05 21_Brandy & Gary Wedding_0081_edited-1" border="0" alt="2011 05 21_Brandy & Gary Wedding_0081_edited-1" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2jF2LBxBxOuA92U-sV5SunmqwWGfalOgDjEW9hEzDrYQK5cXI3eXH3IwDoPcJsoISmVRg6JP78rpVTgbsEDyzvjJ3ecLpFXAQSPkxONS4EBHL3tqCWtuZehqUCN-WE9wVi-RHmmvY_fo/?imgmax=800" width="364" height="350" /></a></p> <p><em><font size="5" face="Pristina">Getting ready to walk down the aisle.  Taylor held her flower up to her forehead.  (I have no idea why though I wish she could have told me the reason. *laughs*)</font></em></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRZY6_S4za81naKBJVjNFjKuYW8p2UPtsXXCico1eM4hf0YU37L2Co2PsKsFdQhbtXz3tAWiyR5X8NgvmmO32HMTtnyDYEmbuJNJYxceiloIvxQ3reSFnLkuQuj084WnyY5FT3JNryAw0/s1600-h/2011%25252005%25252021_Brandy%252520%252526%252520Gary%252520Wedding_0389_edited-1%25255B4%25255D.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="2011 05 21_Brandy & Gary Wedding_0389_edited-1" border="0" alt="2011 05 21_Brandy & Gary Wedding_0389_edited-1" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisMsEeaPNWrF9EEoQe2ysO7wYM8p4j9mAo5F9zYEiy8xxOfdkJ1Py1zqKBOe06KW6os_ajV1eV66Nf6IsSopwOzXO1nY_OA6NPPAkYLa-cJSVTSdvk_Y0ssEhCNmbaV3hnLP_BZ5HBFFE/?imgmax=800" width="332" height="400" /></a></p> <p><font color="#595111" size="5" face="Pristina">She’s getting her “groove thang” on with her sister.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5B40w8xPBxRbGyDUSO5-W804OqUx6ry5TqMI1EdYLXxNBLocIvNbPmOqfJ76XaKTyOfIiWKStX33W4FKDIoLU8lXhZVKq7kWHjW_i-3eGv3lcAvxvb5CQ5CyeqSBczfiiBgh8fD4Caiw/s1600-h/2011%25252005%25252021_Brandy%252520%252526%252520Gary%252520Wedding_0394_edited-1%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="2011 05 21_Brandy & Gary Wedding_0394_edited-1" border="0" alt="2011 05 21_Brandy & Gary Wedding_0394_edited-1" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNkguXEssOSoJsUMQdUyiW1nIgEArf-FlvmXkm7Fg63yMR4VZdaFLJp15h6fmwVNnfOJ5_wdFmRNho9OTiAw-xsxnN9yO9EeP1f1FQ5ROsemOGF9eq3xELS1VEX9Vcq76PL_h8RFcfuNk/?imgmax=800" width="397" height="395" /></a></p> <p><em><font color="#595111" size="5" face="Pristina">Trying to steal her sister’s new husband.  Taylor started trying to steal boyfriends the moment her sisters started dating.  She’s evil that way. <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDgsImXGxJ6ioWI8liOvmFLxHQDaqGra_57nHoO9lMu9XslgSqGZF3-iU10zdVr-5Agg_guQWu7MLGHUXWn4qFvrIylxJ7Vw6gzLBskU7V6mzFXaS87xiRU5eJhe5-BqZnNSZ2pz1qS2Q/?imgmax=800" /></font></em></p> <p><font size="5" face="Pristina">Hope you enjoyed the pictures.  There is nothing like looking at Taylor’s smile to brighten my day.  I hope she does the same for everyone else.</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com5tag:blogger.com,1999:blog-8254072895182964465.post-10871514356742277102011-07-15T16:30:00.001-07:002011-07-15T16:41:59.375-07:00Long Overdue<p><font color="#595111" size="5" face="Pristina">First, I want to thank everyone for all their kind words and support.  They meant the world to me.  I don’t know why I seem so averse to updating this blog.  I need to get back to regular blogging.</font></p> <p><font size="5" face="Pristina">Yes, things have been busy but I need to make the time…at least for my emotional health.</font></p> <p><font size="5" face="Pristina">Taylor is doing very well.  She has some issues, but then she’s always had at least one issue all the time, so it’s nothing big.  She is still her smiley, happy self.</font></p> <p><font size="5" face="Pristina">Since her sister got married and moved back to GA…see, it has been awhile.  I’ll have to post pictures.  Taylor & I walked her down the aisle.  She married a wonderful Army MP when he came back from Korea in May.  They had 21 days here before they had to pack up and move to Ft. Stewart, GA.  He’s scheduled to deploy to Afghanistan this coming January.</font></p> <p><font size="5" face="Pristina">I promise I’ll go back to writing regularly.  If not, <a href="http://madiesblog-jamie.blogspot.com/" target="_blank">Jaime</a> can bug me. *laughs*  I will leave you with a video of our 4th of July light show.  Yes, The Bossman loves his lights.  Wait until you see video of this coming Christmas.  Visit our <a href="http://vimeo.com/cascadechristmaslights" target="_blank">Vimeo</a> site if you want to see the rest of the songs.</font></p> <div style="padding-bottom: 0px; margin: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: none; padding-top: 0px" id="scid:5737277B-5D6D-4f48-ABFC-DD9C333F4C5D:723c46f5-4936-4849-8711-8a8e1484edde" class="wlWriterEditableSmartContent"><div><object width="406" height="222"><param name="allowfullscreen" value="true" /><param name="allowscriptaccess" value="always" /><param name="movie" value="http://vimeo.com/moogaloop.swf?clip_id=26057263&server=vimeo.com&show_title=0&show_byline=0&show_portrait=0&color=00adef&fullscreen=1&autoplay=0&loop=0" /><embed src="http://vimeo.com/moogaloop.swf?clip_id=26057263&server=vimeo.com&show_title=0&show_byline=0&show_portrait=0&color=00adef&fullscreen=1&autoplay=0&loop=0" type="application/x-shockwave-flash" allowfullscreen="true" allowscriptaccess="always" width="406" height="222"></embed></object><p><a href="http://vimeo.com/26057263">Summertime Medley - 4th of July Show 2011</a> from <a href="http://vimeo.com/cascadechristmaslights">Cascade Christmas Lights</a> on <a href="http://vimeo.com">Vimeo</a>.</p></div></div> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com6tag:blogger.com,1999:blog-8254072895182964465.post-38333363078153015302011-06-01T09:52:00.001-07:002011-06-01T09:52:21.918-07:00Courage<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjblY_eJCvePGE5WjnCR_Y7VNuOSYXxmZ8qXdkqCfJJGBwEdXLELuilzQVZYqwsuytGhlH4N7CLyDH_gLq_jiAm1zcbe6_kAAznyV_XWWf-6HxmX0BW01E57IdixFIrlt93LT_DI89JLvw/s1600-h/Taylor%252520ballons%25255B5%25255D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Taylor ballons" border="0" alt="Taylor ballons" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO2uJAP63aeFRl3x6fBL405OUo_iIjTh_vyOY4_6uUUqZnARwP-Pf7sJ_Bz-z33TwxSowIw-nGYgWmdTUJ3I0Qnx40T12XEMtiY4WwQ4lg0e02BQXyJM6NJyn8do_dFGHuE0RhGgFKNeI/?imgmax=800" width="248" height="335" /></a></p> <p><font color="#595111" size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">I’m confident in the decisions I’ve made & I can’t let what others think scare me. </font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.  </font></p> <p><font size="5" face="Pristina">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?</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.</font></p> <p><font size="5" face="Pristina">  </font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com22tag:blogger.com,1999:blog-8254072895182964465.post-41314442988357369392011-05-10T22:03:00.001-07:002011-05-10T22:06:15.828-07:00Life At This Moment<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEEaRxNO3q6Ay9fQTKedUyroBNabZrFd7LW-8v31q_LuZRfcGofmTGRRfbjXc6Ix-hsrmHd-gCcOkZB1T5myHgDfJexaM7wjGBAU5tmf6V-UWzLQpXIDFAjKFr5ACPrycSp0QWntZ1S4s/s1600-h/Taylor%20infusion%20008%5B5%5D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: left; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Taylor infusion 008" border="0" alt="Taylor infusion 008" align="left" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixidGgJ0DfJnwjydkiq1SwxXLaNV9fA1OmXNIaIq-Pjny_h2hOJZgQVPOUynej2TlQvuoHClKBjmLpc4oa44ZRM1SKpMLTI9_Fl6YAMcFIihltsQXYnLlsoJ35Bl9kYo-MB0YjLXJWXuU/?imgmax=800" width="261" height="352" /></a></p> <p><font color="#595111" size="5" face="Pristina">I’ve been gone for quite awhile.  Life just got busy.  Of course, then unexpected things started to happen.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">Unfortunately, while we noticed some improvement initially, her foot and leg are now right back to being big & swollen.  </font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><font size="5" face="Pristina">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.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFkHZeANSIew4R4BsmtyiDYv8pHE_vo-ceeneN5od_NfzgU5dDJZse6Hy2jamyuuQGw_8gVHbX6gTeKn1SSOyTKzrVPrIehK9QztTshkViJUCpxEZQ2K6SfFH99KDXWfcYySl8aNdZsFc/s1600-h/Taylor%20infusion%20002%5B5%5D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Taylor infusion 002" border="0" alt="Taylor infusion 002" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1Tm5VYLeudRpIo8_l_KwzYxfw031LsURdchrjgFgFHABqPDjLB-tUVL0dzOj4iOLBra0OhkJPYoPZL4R8yvkcNfp5UJn_7Jt8rjsuaE6Oby_ol04HP9GD16tJCTbdkDKhIFzHSser8eI/?imgmax=800" width="269" height="363" /></a></p> <p><font color="#595111" size="5" face="Pristina">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.</font></p> <p><a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a></p> <p><font color="#595111" size="5" face="Pristina">**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.**</font></p> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com6tag:blogger.com,1999:blog-8254072895182964465.post-16065776588470365892011-03-23T14:08:00.001-07:002011-03-23T18:59:27.789-07:00Feeling Like an Outsider Sometimes<p><font color="#824100" size="3" face="Segoe Print">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.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgImZ6Z05H9ncwDvnHdni-_4HKBPZGmCZa6sxANkQp40_KhQDEtccXWxh_vMuSl93SJGb_RTpl7MpQNLrqGTxW5lKA96p_zdPlcuSNe2fje4Y2CByhP51Z7Sr-FjKB0CGvpPZoeBxMrefY/s1600-h/003%5B5%5D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="003" border="0" alt="003" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht7wHfPWDw2iMzHXGicvuHfKxnet9YLOuXoBs4xA6JowPAg7aFYPKE1ZLmRDFrUsmLOSkt9V_mTJ9sLiboUrhjIz87n_SMxAvUi1JUa_U2H3A2Ihl9RP-1JGukMdrZkt3T4hrbJbqr2TM/?imgmax=800" width="391" height="301" /></a></p> <p><font color="#824100" size="3" face="Segoe Print">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.</font></p> <p><font color="#824100" size="3" face="Segoe Print">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.</font></p> <p><font color="#824100" size="3" face="Segoe Print"><a href="http://children.webmd.com/chromosome-9-trisomy-9p-multiple-variants" target="_blank">Trisomy 9p</a> 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.</font></p> <p><font color="#824100" size="3" face="Segoe Print">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.  </font></p> <p><font color="#824100" size="3" face="Segoe Print">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.  </font></p> <p><font color="#824100" size="3" face="Segoe Print">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.  </font></p> <p><font color="#824100" size="3" face="Segoe Print">After 21 years of caring & loving my child, I now needed approval from the state?  Yep, you do.</font></p> <p><font color="#824100" size="3" face="Segoe Print">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.</font></p> <p><font color="#824100" size="3" face="Segoe Print">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”.</font></p> <p><font color="#824100" size="3" face="Segoe Print">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.</font></p> <p><font color="#824100" size="3" face="Segoe Print">And just because she’s cute, I’ll leave you with a picture of the reason I do blog…</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc21aZArP_qBMxtOAlc0A3CCodi70D45y8mkEtPF77XcT8G-aO0St9ramLVfhXzBgFu2abmvkpoKUKKBO5PdfDNMEJ0EQEsnBXldlbYVP-h0tWsxEKMuchTt4KfXugfksQnUxTiPQP4eU/s1600-h/taytay%20and%20linda%20019%5B5%5D.jpg" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="taytay and linda 019" border="0" alt="taytay and linda 019" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-dvTGamGbxGB8SVjRtn-8du7TaeoalBgUZPPc9vfrtAX-sHO5dYlv99aQnhj8PI8jXE9Fw0fXY4O10s1gIm7mJ-8yllVVdCAZO8wESfyBD2SSjHTyAiFjK-DBPlvP4XnpP51NljF7dTI/?imgmax=800" width="381" height="262" /></a></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com5tag:blogger.com,1999:blog-8254072895182964465.post-13293764787131118312011-02-09T10:24:00.001-08:002011-02-09T15:23:34.059-08:00The Puppy Whisperer<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh-fAN-UyNn2EN8v4un9gDFkFu5SBBvtn3GmZs2SnQbLmXFhbjOYuSwYxXFHiHKAJ-EZ78bVmyhUsuct7FTYOPYo9w4oD1jj31adp86ANgL8dQyn7NrHwBIIXqD3XBSOGW5VSwRSA6EtA/s1600-h/Taylor%20&%20Jasper%5B2%5D.png" target="_blank"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="Taylor & Jasper" border="0" alt="Taylor & Jasper" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc7AoPqhAa2bYou0tDH_WCwKNohL1yGCs6SY6k5kBkcy7OIlsd3wF5yLaT5mVjHGSqO-1kdAtKriQ-cr66O8zOKrLmExkQpXwOH8ftv8il9TQYgbXHx9I9gYquJEav50U1OoFmcVbIXro/?imgmax=800" width="436" height="299" /></a></p> <p><font color="#595111" size="4" face="Segoe Print">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.</font></p> <p><font size="4" face="Segoe Print">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.  </font></p> <p><font size="4" face="Segoe Print">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.</font></p> <p><font size="4" face="Segoe Print">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.</font></p> <p><font size="4" face="Segoe Print">There are some things health wise that are going on with TayTay, but I honestly just needed to write a “feel good” post today.  </font></p> <p><font size="4" face="Segoe Print">Nothing is more heart-warming than this picture of Taylor & Jasper.  You can just see the love in both of their eyes.</font></p> <p><font size="4" face="Segoe Print">Happiness is a girl & a puppy! *smiles*</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54489/73/AFAF8872EACF9FC1D18DBBD8070AB6C8.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com7tag:blogger.com,1999:blog-8254072895182964465.post-52782239017241515502011-01-22T23:00:00.001-08:002011-01-22T23:11:05.762-08:00So Much to Say…<p><font color="#804000" face="Segoe Print"></font></p> <p><font color="#804000" face="Segoe Print"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2yrVMesMgdgvDNUP5a-ln8jC22dUE3UI4Lv04xXTdkrPDOSN6haG5ig9BkjTJt7JmlRBlF2RaU3byYIgfPF8h9UO6QpfzcuBDWX9eMXpb1Ip9wcFVYVpEaOBPbS-zkRzrytTxuY5aAd0/s1600-h/Taylor%20ChuckECheese%5B4%5D.jpg" target="_blank"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="Taylor ChuckECheese" border="0" alt="Taylor ChuckECheese" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpwW4hJ9isCwE8G3nXRcyB9iV3defGSJynbLmpbxuBri-goT3NVpWBzuVDE1j7XseQYv53tY88WdoI8c9vNF43Rx8N12wPt7nFbzgGIjzdKoSrKyD3pC4tIdqZURXRJsQk8cs98iZ06yI/?imgmax=800" width="454" height="312" /></a></font></p> <p><font color="#804000" face="Segoe Print"></font></p> <p><font color="#804000" face="Segoe Print">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.</font></p> <p><font color="#804000" face="Segoe Print">Christmas was hectic because we decided to do <a href="http://www.vimeo.com/cascadechristmaslights/videos/sort:oldest" target="_blank"><font color="#000000">this</font></a> 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.</font></p> <p><font color="#804000" face="Segoe Print">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.</font></p> <p><font color="#804000" face="Segoe Print">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.</font></p> <p><font color="#804000" face="Segoe Print">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.</font></p> <p><font color="#804000" face="Segoe Print">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. </font></p> <p><font color="#804000" face="Segoe Print">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?</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com4tag:blogger.com,1999:blog-8254072895182964465.post-72403237236141734222010-11-17T19:42:00.001-08:002010-11-17T19:42:01.544-08:00Computer Avoidance<p><font color="#008000" size="5" face="Gabriola">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.</font></p> <p><font color="#008000" size="5" face="Gabriola">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.</font></p> <p><font color="#008000" size="5" face="Gabriola">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 <a href="http://www.cascadechristmaslights.com/" target="_blank">here</a> if you’d like to check out our progress.  We only have 1 week to go before show time.</font></p> <p><font color="#008000" size="5" face="Gabriola">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 <a href="http://lifewithtrisomy9p.blogspot.com/2009/08/long-story.html" target="_blank">here.</a></font></p> <p><font color="#008000" size="5" face="Gabriola">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.</font></p> <p><font color="#008000" size="5" face="Gabriola">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.</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com1tag:blogger.com,1999:blog-8254072895182964465.post-17218227870808441312010-09-29T22:13:00.001-07:002010-09-30T01:18:18.430-07:00There Are Still Some “Firsts”.<p><font color="#400040" size="5" face="Gabriola"></font></p> <p><font color="#400040" size="5"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKRPf4_mmQs5KhLLSWTC-6QQRA6LkEoiTet0dgFQU6CfxumGU8U0gihgWQNWGwsq4QhNaj-nhiYXBJXnFjshCK6tc6yxKN6uMbOsA69MjR3_YGZBITIIq-X3-XffXvuotAlBlSr6o7N6k/s1600-h/Taylor%20playing%5B5%5D.jpg"><font face="Gabriola"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="Taylor playing" border="0" alt="Taylor playing" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6HY40V-u-TDOLtUBcE7yF8XxS8KLlVFFHN-ig62M93mteNDRTKasxv-jg8ARFVT98e9EcSJmesHks7IL8iBpqkr-dnD_PhInfR_EXVDHuxDVNSNRAkKRmm6c7MJ1TK8yVBZd9jHLLNHQ/?imgmax=800" width="328" height="251" /></font></a><font face="Gabriola">   <font color="#008000">       <font size="4">I had to sneak this picture with my phone so she wouldn’t stop playing.</font></font></font></font></p> <p><font color="#008000" size="5" face="Gabriola">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.</font></p> <p><font color="#008000" size="5" face="Gabriola">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.</font></p> <p><font color="#008000" size="5" face="Gabriola">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.</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5hEAPYcQyd8URUWD3phewtNHLXYyg3Ip1rDvqCT5YbvQx3fZXO_8HNeQ8GShgC2LCDPKDuVw0sIU4KmWH8HdG1NMGk6-_IWEF2QS9vYqahJfQZs6NaLaWX-J1-yhjv4xrUqQQ1ZjegYM/s1600-h/Taylor%20playing%20puppy%5B5%5D.jpg"><font color="#008000"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="Taylor playing puppy" border="0" alt="Taylor playing puppy" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiayrpUCs4TBuIGhyWrA2iFK1p8NoZgOy3y-5_ePbMP8lYrnY1GyWSJF8vVvXydAUbBSX0f50blPB6ZvXjJdgp4bUQB-JM2SBpGdnTyMfRlxndxwuxKQ1R-fr3jar4k07BwoNBDtF8dFH8/?imgmax=800" width="347" height="265" /></font></a><font color="#008000"> </font></p> <p><font color="#008000" size="5" face="Gabriola">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.</font></p> <p><font color="#008000" size="5" face="Gabriola">And yes…I cried.</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com6tag:blogger.com,1999:blog-8254072895182964465.post-64039472287028488212010-09-23T16:10:00.001-07:002010-09-23T21:39:58.005-07:00Anti-PC Post Ahead…Proceed with Caution<p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG3QhmT1W56qKDgx8RWF4YttM0DvVP1pODN8FyQpTTRWPAnH9hb4RYYe-VEgIn0M6pImVuaXTB1_-ORMODAYSlkxLsFnqmuL2QdVo7ZaJ0lMJE__dnYQ0iwLK6UJfMBnTcIM7SmleQ6NE/s1600-h/ptcircus2%5B5%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="ptcircus2" border="0" alt="ptcircus2" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9220-iRJ_2hZTF86JKXhIiThyphenhyphensD82RZmFIW76uGYe81Fn34E8ZYVnPNoi8lhIfzPLI-dUUeHVKkO9MVEUzr8bPKtr9CF33lZzKJ5XkMp1yfcQb_olWkEJ5EnyaB5_RoLewmUw21ChML0/?imgmax=800" width="381" height="410" /></a> </font><font size="5" face="Gabriola">I realize that my voice is going to be in the extreme minority here but I feel like I need to say something.  </font></p> <p><font size="5" face="Gabriola">There are a lot of things that our lawmakers in Washington need to address…namely the fact that millions are out of work.  Our economy is still on a downward spiral.  Small business owners are being taxed like crazy.  I can vouch for the last one first hand.</font></p> <p><font size="5" face="Gabriola">Look, as the mother of a profoundly, developmentally disabled daughter, I understand the power behind words.  However, right now, taking the words “mentally retarded” out of government documents seems like a waste of Washington’s time. Click <a href="http://news.yahoo.com/s/ap/20100923/ap_on_go_co/us_intellectual_disabilities_1" target="_blank">here</a> to read the story.</font></p> <p><font size="5" face="Gabriola">There are too many families who don’t have enough food, enough money to pay their bills or house payments.  Shouldn’t we concentrate on those issues right now?</font></p> <p><font size="5" face="Gabriola">I realize that I’ve probably offended most, if not all, parents of special needs kids.  However, I just think there is a time for everything and maybe this wasn’t the right time.  We are so politically correct about everything…even to the point where sometimes I don’t even know what to “call” my child when explaining her issues to others.  </font><font size="5" face="Gabriola">You can’t say disabled, you have to say “differently-abled”.  Handicapped becomes “handi-capable”.  </font></p> <p><font size="5" face="Gabriola">These are just my personal views and I definitely don’t expect everyone to have the same.  I just feel that sometimes, people are too scared of offending someone with a differing viewpoint.  I almost didn’t post this because I was worried about what those that read here would think.  But then I realized that it’s my blog & if  I can’t voice my feelings here, where can I?</font></p> <p><font size="5" face="Gabriola">I welcome all differing opinions to comment here.  I just ask that you be respectful.  Dialogue & debate (with manners) are always appreciated.</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com10tag:blogger.com,1999:blog-8254072895182964465.post-83327817206899766382010-09-22T16:35:00.001-07:002010-09-22T16:36:57.046-07:00Mothers Lie<p> <br /><font size="5" face="Gabriola">By </font><a href="http://loriborgman.com/" target="_blank"><font size="5" face="Gabriola">Lori Borgman</font></a></p> <p><font size="5" face="Gabriola"><em>Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Mothers lie.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Every mother wants so much more. <br />She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. <br />She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>She wants a baby that will roll over, sit up and take those first steps right on schedule.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Call it greed if you want, but a mother wants what a mother wants. <br />Some mothers get babies with something more.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>The doctor's words took your breath away. <br />It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news. <br /></em></font></p> <p><font size="5" face="Gabriola"><em>It didn't seem possible. <br />That didn't run in your family.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Could this really be happening in your lifetime? <br />There's no such thing as a perfect body.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Everybody will bear something at some time or another. <br />Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Mothers of children with disabilities live the limitations with them.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>Frankly, I don't know how you do it. <br />Sometimes you mothers scare me. <br />How you lift that kid in and out of the wheelchair twenty times a day.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>You snap, you bark, you bite. <br />You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule. <br />You are the mother, advocate and protector of a child with a disability.</em></font></p> <p> <br /><font size="5" face="Gabriola"><em>You're a neighbor, a friend, a woman I pass at church and my sister-in-law.</em></font></p> <p> <br /><em><font size="5" face="Gabriola">You're a wonder</font>.</em></p> <p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola">This is something I ran across and just had to repost.  Sometimes you come across things that just beg to be shared.  This, to me, is one of those things.</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com2tag:blogger.com,1999:blog-8254072895182964465.post-51659631279618128062010-09-13T11:39:00.001-07:002010-09-13T12:30:02.882-07:00Summer Fun Video<p><font size="5" face="Gabriola">I realize that this post can’t compete with Brandy’s sister post, but I’m hoping that some video of Taylor, Brandy, & the grandkids will at least come close.</font></p> <p><font size="5" face="Gabriola">I have to thank The Bossman for taking the time to make my video look way better than it actually is…gotta love editing.</font></p> <div style="padding-bottom: 0px; margin: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: none; padding-top: 0px" id="scid:5737277B-5D6D-4f48-ABFC-DD9C333F4C5D:a145324d-85a3-4930-a471-7bc650cb13e9" class="wlWriterEditableSmartContent"><div id="6728c9a5-b612-43dc-90dc-5e320e588442" style="margin: 0px; padding: 0px; display: inline;"><div><a href="http://www.youtube.com/watch?v=tGrKwcRtfLs" target="_new"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh90MRfksQajGPLt8YdkZTjoXvtkjtbOzsVgZG6agEiApnL6CJSEMz8VhyphenhyphenTQ_MaPaaikq3vINFaiY43r9Jsu5eneXVo_F_h1cccz_DvQn7MzwrlN_CKED8U8YtspBDGXo_lC2M2txJ3QGg/?imgmax=800" style="border-style: none" galleryimg="no" onload="var downlevelDiv = document.getElementById('6728c9a5-b612-43dc-90dc-5e320e588442'); downlevelDiv.innerHTML = "<div><object width=\"402\" height=\"336\"><param name=\"movie\" value=\"http://www.youtube.com/v/tGrKwcRtfLs&hl=en\"><\/param><embed src=\"http://www.youtube.com/v/tGrKwcRtfLs&hl=en\" type=\"application/x-shockwave-flash\" width=\"402\" height=\"336\"><\/embed><\/object><\/div>";" alt=""></a></div></div></div> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com3tag:blogger.com,1999:blog-8254072895182964465.post-40783780695983913932010-09-08T19:27:00.001-07:002010-09-08T19:31:13.049-07:00Sisters<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3j7c1jICIZXFDhyA1AowvtcUD-lp9hYoS9MlFSGA1YzufvB_FWJ4ekXZ0go3dIwYeuYBExXXfDu8fxSaIovJ8sD72nLR2Ks8cXEQtO1mHAiXazYu5FSqMvxqDlafzMzHoS3AqQfJrAb0/s1600-h/roaring%20river%20with%20mom%20030%5B5%5D.jpg"><font size="5" face="Gabriola"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="roaring river with mom 030" border="0" alt="roaring river with mom 030" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc96VKiFUHqQiA1F8QHQZ5k9au32U-4ECydACh_o1oORWiOk_U6hXuLqD9FhL5H5kPH6P0PLtT8Mgc_kXVFzXcBC-Yv7wr74pcQdXKymwIg9mAKgcAHqajFaAD7xTBwdWC0oPmOyTteik/?imgmax=800" width="387" height="294" /></font></a><font size="5" face="Gabriola"> </font></p> <p><font size="5" face="Gabriola">Mom gave me an idea to write a blog on Taylor’s blog from the sister’s point of view.  I thought it was wonderful the hard part is figuring out where to start.  So I will kind of start with the beginning and see how it goes. </font></p> <p><font size="5" face="Gabriola">I remember Taylor’s nursery like I was just there, and I was only 5 when she was born and I can tell you where her brown crib was and the beautiful silk off white bedding she had.  I guess I was excited about her!! </font></p> <p><font size="5" face="Gabriola">When she was born I remember me and my older sis running in there to get her up and make her pink bottles, they were pink because she had to have medicine in them, looked like strawberry milk.  Growing up with Taylor was a wonderful experience, I don’t remember all those life threatening surgeries or choices that my mom had to go through at least not till we got way older like now. </font></p> <p><font size="5" face="Gabriola">I remember trying to get Taylor to a new accomplishment, for example I was the first to make Taylor laugh and I remember every detail and can picture that moment in my head. So me and my older sis always wanted to get her to do something else, whether it was laughing, talking, standing, or walking we just couldn’t wait to get her there.   I do remember teaching her to say “boobies”, I was a good sister but I wasn’t perfect.  I also remember Taylor loved to stand on the furniture facing the back and we would duck down on the other side and play with her but let me tell you if she got your hair that was the end of it..ouch! </font></p> <p><font size="5" face="Gabriola">My main point with this one is being the sibling of a special needs child like Taylor we are the lucky ones, growing up with them we get to have all the fun and none of the worries like the parents do.  I can’t be 100% sure but I can’t recall a time that I was ever jealous of Taylor and the attention she got, either it’s that I was so darn good or I was raised right!  </font></p> <p><font size="5" face="Gabriola">I hope you enjoyed this sister blog and look out for my next one, I already have what I will write in mind! </font></p> <p><font size="5" face="Gabriola">Thanks, from the sister of Taylor</font></p> <p><font size="5" face="Gabriola"> </font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/199/24796F09465E28FC3E864862C8999733.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com10tag:blogger.com,1999:blog-8254072895182964465.post-36820109953057078102010-08-23T15:18:00.001-07:002010-08-23T15:51:47.367-07:00Come to the Dark Side<p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKYR7fLHJnAaeYynEzeN6W_s2DyOzafuuNw1PLwssvN7QkQqXXwE8JE6UGP-0xZxuTRi3Fh3pPZFPbIGVWVTavLT2iWMLhawQ55ROTzqyNVWwWN8oEcZ3f_F-u7IzZb4c1zUsqr0RbJ68/s1600-h/dark_humor%5B5%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="dark_humor" border="0" alt="dark_humor" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuAz1BBp02Ca5thW__Ton4RUmjlUya2Q6SNyulmRuOF8tSr9qgKh53cpHWv3CkTH8yePZcquzrPZuLnnNv_2mwEkYJdSMxoMLLQdZ9oJKZHU5NXxD3uY__Vr-PZ2UQTWDWVTHW_FGsbPg/?imgmax=800" width="408" height="310" /></a> </font><font size="5" face="Gabriola">I don’t know about other parents of special needs or medically fragile kids, but I use humor to cope with the many ups and down that this life consists of.</font></p> <p><font size="5" face="Gabriola">It’s what I use to get through every life-altering event that Taylor has gone through since the very beginning of her life.  We called her “stick baby” because she was almost 29 inches long but only weighed in at a whopping 5lbs when she was 2 weeks old.  Just picture a stick figure drawing & that’s what Taylor looked like.</font></p> <p><font size="5" face="Gabriola">When she was older and we could see that her skull was a little misshapen around her forehead, we called her “Frankenbaby”….with absolute love.   </font></p> <p><font size="5" face="Gabriola">Because she has seizures & loves salads, we started ordering her a “seizure salad” (think Caesar).</font></p> <p><font size="5" face="Gabriola">When she turned 21 last week, I told some people that I was going to take Taylor to a bar and order her a Jack & Coke just so I could see the bartender/patron’s faces when she paid using money from her Blue’s Clues purse.  </font></p> <p><font size="5" face="Gabriola">Now, you might be wondering where I’m going with all of this.  Apparently, some people are offended by the above things.  I’ve also met some parents of special needs kids that are so caught up in their child’s diagnosis that they forget there’s actually a child attached to whatever condition/syndrome it is.</font></p> <p><font size="5" face="Gabriola">I don’t begrudge anyone whatever it takes for them to cope.  If you don’t get my humor, that’s okay.  If you find it offensive fine too.  Just don’t tell me or try to make me feel guilty about it.  I could make myself cry every day if I just sat and thought about all of Taylor’s health issues.</font></p> <p><font size="5" face="Gabriola">I don’t want to do that for many reasons.  The main one is that it doesn’t reflect who Taylor is.  Taylor is happy.  She loves life.  She laughs a lot, hugs a lot, gets joy out of caffeine-free Diet Coke so why am I going to walk around with the “oh woe is me” face?</font></p> <p><font size="5" face="Gabriola">When I was talking to The Bossman about this post he said that police & first responders use humor to cope with all the horrors that they deal with.  The Bossman used to be a cop so he would know.  I know doctors that have that same kind of humor.  I’ve shared many a dark humorous moment with some of Taylor’s doctors.  If we heard even a tenth of the coping humor used by police, doctors, EMTs, and the like, I’m sure we would all be properly horrified.  (I’d probably laugh with them because I’m bad like that.)</font></p> <p><font size="5" face="Gabriola">I’m sure this sounds like a rant and I don’t mean it to be.  Well, maybe I do just a little bit.  I just don’t understand why these mothers that email me are so offended about how I talk about my child and deal with the stress.  If sitting around all day, constantly uptight and only defining your child by their syndrome is how you handle stress, well okay.  I’m not going to harass you about it.  I may shake my head at what you write and sigh, but that’s the extent.  I’m not going to email you and tell you that you are wrong.</font></p> <p><font size="5" face="Gabriola">I would invite you to join me on the dark side and make fun of your situation.  While some think I’m making fun of Taylor, I am not.  Fortunately for me, I think she has an awesome sense of humor and if she understood what I was saying, she’d laugh right along with me.</font></p> <p><font size="5" face="Gabriola">For those mom & dads of the specialty kids, what coping mechanism do you use?  I know I’m not alone out here on the dark side. *laughs* </font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> <p></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzuUZxuCg1BhlAbwqc2Meu61SmKulG2qwYFUftbyzA99HqXNyXLqgPIYGK4giRir0ixhndZRRMwT4qY1_00YUPo_IDYxG0Zq4yQB-KBcpCCi7ubQ_I_QnLlwHhe3qMCSE2TghnfzfyOKg/s1600-h/Dark_Side_T_Shir_49deafa8aa755%5B3%5D.jpg"><img style="border-right-width: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; margin-left: 0px; border-left-width: 0px; margin-right: 0px" title="Dark_Side_T_Shir_49deafa8aa755" border="0" alt="Dark_Side_T_Shir_49deafa8aa755" align="right" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizaVBP0RHY1Q_s12XubMeJPHHNchho-mIsYAqM69SjngCw1Ad6abGdJYTnRpnAklNBwtb3Pu5QpEeeu9fdtQNgcT2R6X13YECG5enRkJW60QGTW813tcXc9sz4McTdRLtM6NEohWw0vNI/?imgmax=800" width="244" height="244" /></a></p> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com11tag:blogger.com,1999:blog-8254072895182964465.post-75129478883404303642010-08-18T08:47:00.001-07:002010-08-18T12:04:02.800-07:00Happy 21st Birthday Taylor Marie!!!<p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkhjvEVNHduZLn0phESE6brdKbZNTJ0S-KIHqNqCR-JbtOYbBVo4hQzkn0Acfj8CooD1fKY7mVLHsbw7Eku6TXdjWjwuVtcZBabBdwet6AOxq2F5DPGgdwUP5rRbDp4UQ7H0Gbxc2_hTM/s1600-h/Taylor%5B5%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="Taylor" border="0" alt="Taylor" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8OhnDKNwTaBs08bh5ZzJtMicMAF8dpa8PK8t0LWmowkU0NCuXH3mAG6ZIpl9iE5gOGXPimnOy0azsANzYcmQQzj4oWlpLPlbstA3ANBZ7IekqwYpJ6a6Diw5qYXXZdfj6nIV0JyXDxCo/?imgmax=800" width="391" height="297" /></a> Taylor helping decorate her cake @ preschool for her 3rd birthday.</p> <p><font size="5" face="Gabriola">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.</font></p> <p><font size="5" face="Gabriola">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?</font></p> <p><font size="5" face="Gabriola">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.</font></p> <p><font size="5" face="Gabriola">So keep on being stubbornness Taylor!!!  We love you like crazy and Mommy needs you to hang around!</font></p> <p><font size="5" face="Gabriola">HAPPY, HAPPY BIRTHDAY PRINCESS TAYLOR!!!</font></p> <p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd0ij9JDhyphenhyphens2Mkj12iLOtRlNMIMoHtLpx45P5Hmv5Zp4e6vljwNnZZ7-bw3gnEjbXbWoEX1daYrcjuHIOLxeKcrBgQY2Q9qCC1d1hCKMHFevKOS0SRTCGdiTPWzqW-pw-nCLpObokoANo/s1600-h/Coast_2008%2003%2030_0289%5B5%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="Coast_2008 03 30_0289" border="0" alt="Coast_2008 03 30_0289" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkUSadMtDa-1kdffEcC5KZvV84KkmP4MM9_riyTQ0UhznO-F0XwOPEu1IQDzwTa2ij4XARlYOtyUjviTaNbAPq70DZ0z0WgS1a4vPJAdkKQMFMH_fsjyIygoz0-1vs99sXtmp6rq7HDco/?imgmax=800" width="392" height="298" /></a></p> <p><a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a></p> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com6tag:blogger.com,1999:blog-8254072895182964465.post-12087416725612080192010-08-16T14:43:00.001-07:002010-08-16T14:43:36.608-07:00Reflections on the Past 20+ Years<p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglwa5BSvMGY4icAvwjfeLNeUr4cv7Hn9A5zWg-dtMpVDx-tll7d5RUdT0cfnCxUsifld6uDR4LGT-hzYv1leIRCTyERvxLJ-gkEL44WlSNLeLCtREvR9VVGY5sABVfA_LlLQrVX3Mlcx0/s1600-h/Taylor%20at%20Erics%5B5%5D.jpg"><img style="border-bottom: 0px; border-left: 0px; display: block; float: none; margin-left: auto; border-top: 0px; margin-right: auto; border-right: 0px" title="Taylor at Erics" border="0" alt="Taylor at Erics" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPR9lFRP6PI_px3iD0JXdzPSfHZthx6VRgH64qgIuVFPPK2Xh5ydDOhfbQntSUFf1Q5-E0m_yOpEhpgbEubXk19BiGHaxOT7M0AN5lG7M_A_kbbQDnB9qKosj3VUynApxCfAxAZSM28N8/?imgmax=800" width="363" height="276" /></a> </font><font size="5" face="Gabriola">Taylor’s 21st birthday is fast approaching…just a few more days.  Her upcoming birthday has had me reflecting on the last 21 years.</font></p> <p><font size="5" face="Gabriola">We went from a baby we thought was perfectly healthy to a baby who had less than a year to live.  Obviously, she showed the doctors never to underestimate her desire to live in this world.  Though we are in an uncertain time concerning Taylor’s health, her seizure activity continues to take more & more of her abilities, I will never discount Taylor’s will to live.</font></p> <p><font size="5" face="Gabriola">I would love to say that the past month has been fantastic but it hasn’t been.  Taylor has more and more days that are one seizure after another.  Those days make we want to just curl up, hang on to her, and cry.  But we don’t do that because no matter how many seizures, Taylor smiles.  At the end of the day, Taylor is happy and really, that’s all any parent could ever hope for.</font></p> <p><font size="5" face="Gabriola">I read the blog of a mother who recently lost her daughter.  Her daughter was just a few years older than Taylor.  The grace & beauty with which she is handling her grief is what I would strive to do. Click <a href="http://sheisourangel.blogspot.com/" target="_blank"><font color="#bf0000">here</font></a> if you want to read her blog firsthand.</font></p> <p><font size="5" face="Gabriola">My journey with Taylor has been filled with many, many ups & downs.  There have been many close calls when we gathered to say goodbye to her , only to have her once again, smiling & happy.  I would never wish those hard times on any parent but I would wish a child’s smiling happy face no matter the situation to ever single parent out there.  To those that have special needs kids and those that do not.</font></p> <p><font size="5" face="Gabriola"> </font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com3tag:blogger.com,1999:blog-8254072895182964465.post-60770048598915784132010-07-27T15:06:00.001-07:002010-07-27T23:24:41.119-07:00My Funny Girl<p><font size="5" face="Gabriola"></font></p> <p><font size="5" face="Gabriola"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_pbwjdHTdfpUhVEf74kp1DiGs9UU50Bsyy9apvFWuAb_7PHCO68gQAUGGIV2EEhF4mdfYGq_zzu-Q-QaN4UFwVazcZ5JdkG7C7BmSUvBCFmWK-ldnH3A7AaPixCj97DF0Jc2mMjFZixo/s1600-h/taytay%20004%5B5%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="taytay 004" border="0" alt="taytay 004" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigewlp3FkeCbFeQT1ztC9eCKWMcBYG9RgYKTWgfsD0N75sKa3hNc285pZiJB4zRV77wQXXqmWPFRjcI8BrhxwLQ7JkcyLOekfeMq2lIdYmfc0mHVk6fYzBiirwOJbaklUsf0RkB6S3IHo/?imgmax=800" width="272" height="358" /></a> </font></p> <p><font size="5" face="Gabriola">I guess it’s time to do a Taylor update.  Things have been so busy here in the office that I’ve barely had time to think.</font></p> <p><font size="5" face="Gabriola">I swear, that swing has been a sanity saver for me.  Of course, the days when it’s above 90 I can’t let her go out but that’s only been a few days this week.  </font></p> <p><font size="5" face="Gabriola">Taylor is a weird child anyway.  I know she has trouble regulating body temperature, but honestly.  She’s out on the swing now, it’s 81 degrees and she has to have a blanket.</font></p> <p><font size="5" face="Gabriola">I’ve always called her my little old lady because she has to have a lap blanket on when she’s sitting in her room watching TV.  It doesn’t matter how warm it is.</font></p> <p><font size="5" face="Gabriola">She just came in for a caffeine free diet coke (her drink of choice) and the box of cheese Ritz Bits to take outside.  I had to quit buying the box of small packages of Ritz Bits because she learned how to open the pack by herself.</font></p> <p><font size="5" face="Gabriola">I’d go in her room and there would be 10 empty packs on her desk.  Now with the box, I know when she’s getting them.</font></p> <p><font size="5" face="Gabriola">My almost 21 year old, little old lady, toddler is a funny girl and I wouldn’t trade her for the world.  Even if she’s making me crazy with her increased level of big seizures.  </font></p> <p><font size="5" face="Gabriola">She’s having at least 20+ big seizures a day right now.  But you know what?  When she’s done seizing, she smiles at me.  I think she knows I need to know she’s okay.  Well, as okay as she can be.  How she knows, I have no clue.  I just know that I need that smile when she’s done.  It’s like a relief valve for me.</font></p> <p><font size="5" face="Gabriola">Taylor’s in heaven right now…diet coke, Ritz Bits, the swing, and her mp3 player.  She’s singing so loud, I can hear her through the door.  One of these days, I’ll have to tape her singing and share it.  It’s the funniest thing…in a good way of course.</font></p> <p><font size="5" face="Gabriola">Oh yeah…what is with all the Chinese comments?  Am I the only one getting a ton of them.  I keep deleting because I have no clue what they say.  Hell, there was one on a serious post about Taylor’s health that said “happy days are here again”.  Seriously people?</font></p> <a href="http://www.mylivesignature.com" target="_blank"><img style="border-right-width: 0px !important; background: none transparent scroll repeat 0% 0%; border-top-width: 0px !important; border-bottom-width: 0px !important; border-left-width: 0px !important" src="http://signatures.mylivesignature.com/54488/157/6B2EE39BD490B0ED86F7EB3BBF237D62.png" /></a> Dawnhttp://www.blogger.com/profile/02347856795191035108noreply@blogger.com6