Thursday, November 26, 2009

Humble and Thankful

Having a 'delayed' child and what I've faced over the past 11 months has been the most humbling experience in my life. "I've realized the world doesn't revolve around me and there isn't a sacrifice too great that I wouldn't give to make my child better." I've realized the life i've taken for granted and in that I've learned gratitude. Being truly grateful has made me realize what I do have is enough.
What do I have?
   I have the best kind of husband... the kind that continues to love me throughout the worst of times, including those times when I'm just plain unlovable.
   I have a mother who's inspiring. I don't have to ask for help or support... she just knows and is there when I need her in a heartbeat. I hope I can be half the mom to Maddie as she is to me. The Greg has helped shaped me into who I am too.
   I have a father and another mom (yes, I'm blessed with two) who are amazing as well, I may not be a little girl, but I still hope to be like them when i grow up ;0)
   I have a job, and it's not just a job, it's a house full of friends. (I work at a casino, and that's our advertising slogan) I had to throw that in... I crack me up LOL ;0) But really, my co-workers are becoming more and more like family. They might not even know what I'm up against, but their thoughtfulness and nice gestures have given me a lot of strength. My boss is pretty admirable himself: he's compassionate, understanding, and generous. I have a great repor with him, which makes coming to work a good experience.
   I have the BBC board. Did you know I'm not the only one who's experienced such chaos with a child? This is an amazing group of women. They are strong, supportive, and have given me some pretty incredible advice. I've never met any of them face to face, but they've changed me.
   I have a beautiful baby girl. It's too bad there's not a milestone for smiles, because hers would top the charts. I know I've written a lot about the frustrations/headaches Maddie's given me, but at the end of the day I LOVE BEING MADDIE'S MOM. I've learned the enormous capacity the heart has to love from her and that's a beautiful thing.

One last thankfulness line and I'll wrap this up (I have great friends and extended family as well, but they know they're awesome and I love them so i won't get carried away and go on and on like I could) So, that last line which many of you may not know... I'm wealthy.
(No, I don't have much money in the bank... do you know how expensive Dr's and hospitals are, good grief!) But, I am wealthy, and if you still don't know just how wealthy I am, go back and start reading from the top! The people in my life are amazing!

HAPPY THANKSGIVING everyone ... gobble gobble!

-the quote above in italics was said by Maureen, She's pretty great too! I thought that quote was profound so I plagiarized it! Those may of not been her exact words, I don't know.... but it's profound!

Thursday, November 12, 2009


Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
Listen to the NEVER HAVES
Then listen close to me --
Anything can happen, child
ANYTHING can be.

by: Shel Silverstein

I can’t wait to share this with Maddie… She’s going to hear this one over and over and over again. ;0)

I so badly want her to just get up and crawl. She’s been up on all fours rocking for over a month, but she just doesn’t quite have the coordination to put it all together. She did ‘army crawl’ a few days ago. It took a big motivator like giving her a sip of apple juice, then setting the cup halfway across the room to get her going. I LOVED watching her go. She beamed with pride when she reached her destination (the cup). I happily gave her a few sips then moved back to other end of the room and set the cup down… she was determined. It was Bliss! And she did it again! She did it 3 times. I wish I would’ve had the camcorder out. George was watching too…rootin’ her on. I haven’t had any success since then. She decided apple juice is overrated and too much work. We’ll keep at it though.

I’ve been replaying the comments the Neuro made about Maddie’s development and Rett syndrome. It’s like I’m lost in this indeterminate state. One day I’m extremely positive and hopeful thinking that guy was out of his mind. Then without so much as a trigger, my patience runs thin and I feel this impeding doom about the whole situation. I so badly want her to prove them all wrong. It’s tough not having a diagnosis. We’re in limbo. The fear of the unknown and how it’s affecting my child leaves me with a lump in my throat. That’s just it though, it’s ‘unknown’, which leads me back to the hopes that whatever it is, Maddie will ‘outgrow it’ and ‘catch up’. Are you still following me? If not, it’s okay, it’s not you, it’s me…. I’m up then I’m down, the important thing is that everytime I’m down I get back up. Maddie has made tons of progress, and she CAN and WILL continue to do so, regardless of whatever expectations a neurologist who spent 15 minutes with her might have. I love Shel Silverstein… I really needed to read this poem today, and like I said above… I can’t wait to read it to Maddie.

Friday, November 6, 2009

The Honeymoon is Over….

Maddie’s back to her old feeding ways and has been for a few days. I’m irritated, frustrated, annoyed. (I think you get the point). I called Dr. Gregory yesterday…you might remember him from my last post, Maddie’s GI Specialist and my hero. I just knew he’d know what to do! I talked with one of the nurses. I told her the urgency of the situation… I know I sounded desperate, because I was. She informed me that I’d be better off making an appt to see Dr. Gregory in the clinic. By the time he’d get around to returning my call, I’d of already been seen. I agreed and asked when the next available appt was. Her response almost knocked me off my chair… two weeks. She apologized and explained that he is a busy man, etc… blah blah blah! Hello, this is my daughter and she needs nutrition… two weeks is tooooooo long! I hung up more annoyed than I was to begin with. In fact, irate would be the perfect word to describe how I felt. The Honeymoon is over… I want a divorce. I called Maddie’s Pediatrician, bad mouthed Dr. A-hole, asked her if she’d refer me to another GI Doc. “He’s the only one, you’d have to go out of state.” I then called my husband, my mom, a friend…. How can he get away with this? I truly thought he genuinely cared about our situation. After tossing and turning all night, I get into work this morning to see that button lit up telling me I have a message. I ignore it… I hadn’t had my coffee and was still moody. In the meantime, George took Maddie to Dr Diedrichsen’s office. She’s the pediatrician… She’s amazing, but I’ll save that for another blog. He took Maddie to get her flu shot at 9 am. They did a weight check and believe it or not, Maddie still gained weight. We’re now at 15 lbs 4 oz. Woohoo! Lets go back to that message now, I played it…. The message was recorded at 6 pm last night and guess who? That’s right, it was Dr. Gregory concerned about Maddie. HE DOES CARE! He even stayed late to call! I had left my work number with the nurse… oops! Now I feel like the A-hole. Moral of the story: Quit flipping out! Maddie has an amazing team who’s looking out for her best interests. Oh, and did you know that a couple days of poor feeding is normal considering we have our first tooth, actually first 2 teeth, poking through?