Wednesday, March 31, 2010

How did I get here?


I took a drive this morning. I dropped my sweet girls off at the PreK / K school they attend. I then came home, dug up a social security card, birth certificate, vaccination records, reference letters, my driver's license and the 22 page booklet I had to fill out. I walked up the street and handed all of these things over to the office administrator at the elementary school. Ms. J got registered for 1st grade this morning. I am so excited for her, yet I can't figure out how she got to this point - wasn't it just yesterday that she was that sweet little babe that we so carefully drove home with from the hospital? She is funny and smart and reading on a 2nd grade level (I think the 7 kids in her kindygarten class has been a HUGE benefit). She loves school, "being crafty" and anything to do with dolphins. She would wear a sundress every day if I'd let her and she may have quite a future as a diplomat.

I have already requested to meet with the school nurse in July to review our 504 plan. I am going to be a regular fixture at that school for the foreseeable future, they might as well get to know me now. We've already done this, now it's just on a bigger scale.....we'll make it, right? This has me more nervous that the first day I went back to work after having her. I pity the fool that messes with my baby...teachers, school nurse, principals and office staff consider yourselves warned.

Sunday, March 28, 2010

Do you ever want to just hide?

I say this in jest - well kind of. We all have our trials and tribulations regardless of what our lives are like. Ours is a challenge on any given day - as is pretty much everyone in a T1 household. I am the minority in my house, to my kids I'm the weird one because I'm not poking my fingers, taking shots and checking for ketones when I pee. For them, I am SO grateful they will have each other for their reality check on what it's like to live with T1 - I am NOT grateful that they both have T1, but if one thing could make their lives easier, I think living in a house where they're not the only one might actually benefit them. Ms. J has become quite the T1 Yoda Jedi Master - she is not afraid to talk to newly diagnosed kids and tell them how important it is that they listen to their parents and eat what they are given and to learn to listen to their bodies. She can tell by looking at Little G if she's high or low and she wakes up at night if she hears Little G making any kind of noise - she can fly down their hallway faster than a speeding bullet to get to us if she thinks anything is wrong. She will then run right back down the hall to sit with her sister while we grab the tester and fast acting sugar.
I was having a bout with insomnia last night....Wayne was snoring and I was on the sofa, watching SNL, Cold Case, CSI Miami -all the shows that will normally cause me to fall asleep sitting up. I played solitaire, surfed the net for 504 plan information and then turned to my DMom Bloggers, because I wanted to "check in" and make sure that everyone's broods were okay. But EVERYONE in my little D-Mom blogworld got a slap in the face yesterday....or have it coming when they check in the next time. There is a family out there that lost their 14 year old son to T1. Mom went in to wake him up and he had passed during the night. I cried as I read everyone's reactions, I cried for his Mom and Dad and his siblings. I cried for the parent or the spouse of someone with T1 - because I'm pretty certain they are/were scared reading this. I know that when I got done crying and praying for them and for us (collectively "us" as the parents of T1 kids or the spouse of a T1). I went down the hall, testers and juice in hand....and checked my girls blood sugars and gave Ms. J some juice and held Little G until she went back to sleep - or maybe until I was ready to let go of her, I'm just sayin'. I crawled into bed, next to that snoring bear, and wrapped my arms around him a little tighter and felt a few more tears roll down my cheek because all I wanted to do was hide from this reality. But then I fell asleep and when I woke up this morning to the giggly voices coming up the hall to see us, I knew that there is no place I would rather be.
We need the cure, we DESERVE the cure. No Mom or Dad or Husband or Wife should have to worry that T1 is going to take their loved one in the middle of the night. To my fellow soldiers in this war, I wish you great numbers, hugs and the strength we need to carry on.

Wednesday, March 10, 2010

Not Impressed

Okay, so I have a PILE of posts that I need to get up but today I have to vent.....I am so very frustrated with the lows we've been seeing with Ms. J over the last 48 hours. On top of that, I broke down and called Children's (which I don't do unless we're at a complete loss because it ALWAYS adds to my frustration). Today didn't disappoint in that realm, I called at 2pm, left a message for an advice nurse, with the details, my call back number and waited. And waited. And waited. TWO hours later, I get a call and upon introducing herself, asks who she's speaking with and how she can help me.....really? So why didn't I just leave a message with my phone number and ask you to call me back. I bit my tongue, answered her and then went on to explain the lows, that we haven't changed anything about our routine, other than for the past 2 weeks we've been giving her shots before she eats instead of afterwards. I'm waiting to hear the pearls of wisdom about what might be causing her lows, ANY questions at all....instead, she tells me that I need to fax in her logs and write LOWS on the top so they will make them a priority. NO helpful hints, so suggestions, NADA. Exactly why do they call them educators, advice nurses or professionals? I can wing this with the best of them without the nursing degree and the high paying job. I cannot say it any nicer, I am SO unhappy with the lack of care and concern that is presented whenever I do actually call for help with a high or a low. They really should call it a "helpless" center.

I continue to compare our situation here to the care we received when we lived in Sacramento. Our endocrinologists (the 3 in the practice) were fantastic and always greeted us warmly. Whenever we called with a question or a concern we didn't have to wait 2 HOURS for a call back, the longest ever was 20 minutes. Our endo called us twice the first night we took Ms. J home from the hospital, even though he'd just seen her at her first appointment that afternoon. We had 2 calls the first week from the educator and one of the nutritionists emailed us a shopping list. I realize that Dallas is bigger than Sacramento, but the way this system here is set up is a joke and a complete disservice to the patients.

Children's does not account for anything out of the ordinary they will fit you -the square peg -into their round hole....my girls deserve better than this. As their mom & dad we deserve better than this.

I'm wiping my tears of frustration off my hot angry cheeks now and going home.

Tuesday, February 23, 2010

School Fundraiser for JDRF

So our little Kindergarten/Preschool that takes such AMAZING care of both girls has been doing a fundraiser this month for JDRF. This Thursday, the 25th, we're Bouncing for 'Betes at school. We have less than 40 kids and already we've raised well over $1000, I'm so unbelievably proud of these kiddos - they have really put their little hearts into all of this. We have a total of 3 girls out of the 35 or so kids that have Type 1, my Ms. J & Little G, plus their friend Susana is with them as well. The staff, kids and families have shown amazing support for this event. We even had a Room Mom make Gluten Free cupcakes for a birthday last week, which I was really touched by (Susana also has Celiac disease). If you're one of my 3 readers and are so inspired, would you consider giving even a few dollars to help our little school really kick butt in their fundraising? The title of this post is the link to the website for online donations. You can search under Jamie or Gabrielle and make a donation in their honor - I personally think they look pretty darn cute in their little JDRF Ambassador visors on their little pages. If you can't donate at this time, which I certainly understand, maybe you could link to my post so we can get a little more exposure? Pretty please? I'd be ever so grateful!

Thursday, January 21, 2010

Job Hunting

My heart is heavy as I type this post. I am looking for another job. I would LOVE to work for free here at JDRF, but sadly, I have to work to help support my family. We have prescription co-pays that cost more than most people's car payments every month and there is that really bad habit that we all have of eating food. My hours have been cut, I had hoped for a raise, but alas that didn't happen either so I am on the search for another position. As things stand right now, about 75% of what I make goes to pay for daycare & school for the girls and gas money. I hate dealing with money and it is a major source of stress for me and always has been - but my reality lies in the fact that what is happening now will not help my family. We will never get ahead with my current situation and that is not something I'm comfortable with.

For those of you in the Dallas area, I am asking for you to keep this information confidential and not mention this to the folks here in the office because I am doing this quietly. I simply cannot help my family by working and quite honestly I am devastated. When I do find another job I will give proper notice and continue to do whatever I can to help this chapter succeed. There is quite a bit more to this, but I am choosing to handle it professionally.

I have updated my resume and started my search officially last night. If anyone out there knows of anyone hiring HR people with a lot of database management background and a need for someone with recruiting experience, please let me know.

On the plus side, I talked to my mom yesterday and she is seriously considering moving here to Dallas - I almost pulled the car over and did a happy dance on the side of the road. The people of Red Oak can thank me later for holding back. ;)

Wednesday, January 13, 2010

JDRF School Walk Program

So I think most of my 3 readers probably know by now that I work at the Dallas Chapter of JDRF - I am the School Walk Coordinator. I love, love, love my job - but due to financial issues with everyone this year, we are WAY down on our number of walks and raising money from our schools. I wholeheartedly understand schools not fundraising right now, it can be a lot to continually ask parents to support cause after cause. BUT, I participated in a training session yesterday that has me twitterpated...our National office has incorporated a piece of JDRF's Annual Walks, Walk Central into a very specific Kids Walk program for our schools. Basically what this will allow the schools and their students to do is do ONLINE fundraising as well as selling the paper sneakers. Considering we are California transplants, this is great for when my girls are fundraising and we can send emails to aunts, uncles and the Grandmas asking for support. The one feature that I think is great about this is the parental control that is required for a child to participate and the release that is posted that talks about the fact that nothing about the site is searchable from say a Google or Bing or whatever - so the child is protected from online weirdos. I spend my days recruiting schools and moms for this project and I really want to make it a success - so pray for great parents and schools that want to support JDRF and the research.

Wednesday, January 6, 2010

2010 - A Better Year, because I said so....

Okay, the title of this post sounds a bit surly - but that's the way I feel right now. I've picked my word for the year, Christmas is all put away, I'm starting my purge and organize plan, BUT (there's always one of those, isn't there?)we're struggling with Little G's blood sugars AGAIN. Both girls had their endo appointments on Monday - their A1C's were a bit higher than last time, but the dr. was happy with them and said "no changes" - fast forward to today. I received 3 calls from school with Little G's blood sugar readings, they were having a helluva time keeping her over 70 ALL DAY. Granted, she's more active and using her little noodle more than she probably has been at home these past 2 weeks, but DAMN! At one point she was at 51, they gave her 3 sugar tabs, checked her at 15 minutes and she was only at 71....NOT good. I asked them to give her a tube of cake gel (please don't judge, this is what works normally for both of our girls). Another 15 minute check and she's at 87. I was sure she'd be right around 130ish, if not higher. I could hear her crying and the pastor of the church was holding her and rocking her (I may just kiss this man the next time I see him - I LOVE their school). I just want to bang my head on the wall...not that it will do me any good at all - but my question of the day is WHY? I know that other D-Parents out there might read this (all 3 of you) and say, yeah we ask that all the time....but can't someone make some sense of this on days like today? I heard a very inappropriate song this morning on a "mix tape" cd...and really, really would like to dedicate it to Diabetes...if anyone out there has hear the song "F*** You" by Lilly Allen, it's a happy little tune, with a great message that made me giggle....still VERY inappropriate and no my girls were not in the car with me when I heard it. I smiled and sang along as I pulled into the JDRF parking lot....dedicating it to this miserable disease.

Well, that was quite a tangent no? I am determined to make this a better year than last year. I have plans, a vacation to organize, school walks to get on the calendar and gala tables to fill. Also, I would love to find the winning lottery numbers at some point - just so I could make a big fat donation that might expedite the research that will make my purse a good 2 pounds lighter whenever we go somewhere. Too much to ask? I think not.

Looking forward to snuggling up with my littles tonight, lighting a big ol' fire and taking in the little moments. Cheers to you and yours - Walk Awards Tomorrow Night here in the big D - if you're coming, please stop by and say hello!