*Lily's May '03 Journal*

May 2004


Sunday, May 30, 2004

I will not have much time to write right now but I will do so later...but I wanted to wish my precious daughter a HAPPY BIRTHDAY!!! I am so proud of her, she is such a wonderful and amazing little girl!

We are having a small, just family party today to celebrate her 3rd Birthday. I got her a few gifts of course and she has so many other ones too..so I am quite sure she will have a GREAT day!

Yesterday we made a trip to the Louisville Zoo, I got her a season pass so we can go whenever we want to. It was a nice day, with lower humidity so when we got up I thought "what the hay" and called Noni to see if she wanted to go as well so off to the Zoo we went. We had a GREAT time, were exhausted by the time we got home but it was a very nice trip and it is a really nice place to just walk around and look at the plants, animals, and things. I think next weekend we will make another trip that way as well. She did get to ride the train (one of her favorites) but the Carolsel was closed by the time we got to it so we will have to ride that the next time we go.

Anyway...I will write more later, after her party.

May 25, 2004

Wow, it has been 2 years since Brian (my ex-husband) walked out the door on Lily and I so Happy Anniversary to me! I know that sounds harsh but in all honesty it has been the best thing that could have happened to us. It was heartbreaking at first, actually for a while after he left but now, things have moved on and I am much more happy then I ever could have thought possible! I have my girl and we are happy, really really happy SO Happy Anniversary to US!!!

I have to share, today I finally got everything set up for Lily's computer and it is so COOL! We finally recieved the Smart Nav on Friday of last week and so yesterday (Monday) I called my friend Lisa (Billy's mom, the family we visited in Tennessee) and had her help me get it set up. Basically it is a small "camera" that I can either put on top of the computer, or anywhere close to Lily and it has these little silver stickers that you can stick to something (in our case I stuck it to her fingertip) and THAT serves as the mouse so all she has to do is move her finger and the camera thingy picks it up and it moves the curser (or whatever you call the arrow) all over the screen. It is really pretty cool to be honest (you can check it out at www.naturalpoint.com) and it works really well. Anyway, I put it on her finger tip and then put her Microlight switch in her other hand to "click" and away she went. I put in her Rolie Polie Olie game for her to play with and she just went to town with it. We still have some "adjusting" to do with it and trying to find a really good postion for her to work with it but really in all honesty she did great and caught on really quickly. In fact her SLP (Speech Therapist) was here when she first tried it out and was pretty impressed with how well she mastered it in such a short amount of time. Really I just gave it to her and got her set up and let her go and learn it. She is so smart and really did great figuring out how to go into diffent things and working it. It worked GREAT for her and she really seemed to enjoy it. In fact she enjoyed it so much she played with it for several hours today..with NO MOVIES. I am glad I started her off with something she is familiar with like Rolie Polie Olie (her favorite TV show right now) so she knew the characters. It will be alot of fun as she gets better and better, in fact I forsee her being WAY better with it than me! She quickly figured out how to exit the program too :) which meant I had to load it again a few times :) Thats ok, she had fun and that is all that matters. Tomorrow I will stick up some pictures I got of her playing with it.

Well, last Monday we had to say good-bye to our PT (well not really good bye, but she will no longer be making the trip to the house to see her) and today we had to say good-bye to Miss Karen her Speech Therapist and Miss Robin her AT person. Tomorrow we say good-bye to Miss Nancy her Nutritionist and then Thursday we say good-bye to Miss Robin her DI teacher. Then Friday we say good-bye to Kathy Woods who has been our Team Leader in Lily's team. I have to admit I am sad to see them go! Beth, Lily's PT has been here since Lily was just 10 weeks old working with her and we have added the others through the years but with Lily turning 3 on Sunday she graduates to the School System now. I did get some pictures of them so I will have to post them as well one day. They have all been great and have been there for Lily through it all. Beth remembers when Lily went through all the horrible stuff during her first year and has really watched her blossom in the last couple of years as well. The School System seems like a nice bunch really, and so she will be starting the whole Pre-school thing next year but still it will be here at home for now.

Speaking of the School system, we got her report back from her assessment..and it was a good one. She is right on par for a 3 year old. She can do matching things, follows things, but still her attitude shows through when she doesn't want to do something. I was very proud of my girl and her "report" card! I have always known she is a smart girl but sometimes it is hard for others to see it, but the team from the school system saw how smart and funny she is. Ahhhhhh! My girl is growing UP!!!!

One more thing, Sunday we were able to make it to Lily's oldest half-brothers graduation from High School. It was really nice, I haven't seen Adam in a couple of years so it meant alot to me that he wanted me there. When I saw him after the graduation he wanted me to meet his girlfriend so he got her over and this is how he introduced us "This is the woman I was telling you about. This is my dad's favorite ex-wife" in which I had to laugh and I said, "Well Adam, I don't really think I am your dad's favorite ex". He then laughed and said, "Well, your MY favorite".....it was so funny and cute! I couldn't believe how much he has grown up, he is so handsome! His girlfriend is just a doll too and very sweet and pretty. I will post pictures of that too! Anyway, Adam and his girlfriend are going to have a baby IN JULY and so Lily will be a half aunt! Then they are getting married in October so then my 3 year old daughter will have a SISTER IN LAW!!!! I can't help but laugh BUT really in all honesty, they are a cute couple and will be fine. I am proud of the way Adam is stepping up to the plate and I know he will make a GREAT Father. Yes, he is young but he is a very good boy/man as well. I am proud of him and even more proud that I mean alot to him as well, it made my heart feel full. I was a part of his life for several years (as well as all the boys) but things are different since Brian and I split up...but I am glad that I got to know them all and at least have a part in their life. I did try and be a good step-mom (really, I didn't feel like a step-mom, more of just a friend) and to this day I am close to Zachary as well (who happens to be a sweetie). I am glad I was a small part in their lives.

Ok...I think I have rattled on long enough..*yawn* I guess it is time to get somethings done around here! I will post pictures later!

May 23, 2004

First I want to say "HI JAMA!" Sorry I didn't call BUT we will be heading that way again REAL soon and I promise that I will give you a call then so we can visit for a bit!

I can't believe that in 1 week my daughter will be 3 years old! It seems like that time has passed so quickly! Here she will be celebrating a birthday she was NEVER supposed to have and doing things she was NEVER supposed to be doing, what a wonderful wonderful blessing and joy that is. Years ago, when I was much younger :) I dreamed of having a daughter, I wanted a girl so very badly, and you know how young girls dream. Well, even in my wildest imadgination I could not have dreamed up a more perfect daughter than the one I have right now. She is perfect, wonderful, and makes me so very proud each and every day. Each day is a wonderful blessing with her and I am so thankful to have her in my life. She is strong, funny, and oh so amazing to me! I can't believe that God picked ME to be her mommy and I am forever thankful for her!

It is funny, SMA has become such a part of my life BUT it certainly doesn't reign surpreme over it (does that make sense??). I am thankful for the lessons that SMA has taught me through my little girl. Never have I seen a child so content and so happy with just life in general. She sees the good and fun in everything and she (and Nathan) have made me a much better person, mother, and human than I could have ever though possible. Just the look on her face when she wakes up in the morning can make my day brighter. When I am feeling a little stressed, laying down beside her to kiss on her little arms and listen to her laugh can "unstress" me more than an expensive trip to a Spa could ever do! When I am feeling a little "low" a simple "Elvis face" from her can make me laugh and chase the blues away.

She is amazing and each and everyday is a joy because of her. She lives life, she is happy with life, and that makes me happy too! This week I am sure I will be spending time thinking of the past 3 years and all that has happened, from the diagnosis, to our surgery's, to now...I am thankful for her life and most of all I am thankful that God looked down and KNEW I needed HER. He chose ME to be her mother! Wow, I am forever grateful for that!

Lily...I LOVE YOU MORE AND MORE each day!

Wednesday, May 19, 2004

Wow..sorry it has been so long since updating the journal! I guess it is officially spring/summer around here and we are certainly enjoying it!

Not really much is going on right now from the last time I have updated the website, of course I am excited and a little sad that my girl is going to be the big 3 in less than 2 weeks from now! I can't believe it really and I certainly can't believe how time flies! It seems like just yesterday that she was this little screaming cubby ball of baby in my arms and here she is now looking like such a big toddler girl! She never ceases to amaze me with how smart and funny she is.

We had an "Arena Assessment" last week with the School System. Lily will graduate from being in Early Intervention to going into the school system for her services next August. The assessment took place here in our house and consisted of the school PT, OT, AT, SLP, and a few others and they were here to see how well she follows directions, what she knows etc. I will admit to being nervous about it..I KNOW she is smart BUT she certainly isn't much on learning right now. Well she did a GREAT job with everything, I was so proud of her!

We are now working on a few new things, I have pulled out the "Cheap Talk" that we had gotten a long time ago and have started trying to use it for helping her to make choices etc. I have pretty much come to the conclusion that Lily isn't going to speak like you and I do, she is going to need a tool to help her do just that so I am trying to start her on making choices and working with some sort of system in order to get her ready to use something more advanced like a Dynavox in the future. I am not saying that she will never talk, but for now she doesn't how any kind of signs of forming words. Oh, she talks all the time but it is in Lily language and I have to remind her that I can't speak that language very well :) I am really ok with it, it is always sad when you realize something like that but for the most part, I am fine with it and ready to help her find something that will HELP her to speak. It is amazing the tools they have out there to do just that. She has so much going on inside that she is going to want to get it out! She is as smart as a whip and certainly doesn't have to speak to get her point across at all!

Hmmmm...anything else? We did make a trip to Cincinnatti last week, for just the day and we had a great time shopping at the mall. We didn't get anything (I am NOT spending money....I don't have it!)but still had a GREAT time hanging out with Noni and Grandma for the afternoon.

Tomorrow Lily and I are going to make a trip out too, possibly to the mall here just to get out of the house. With the gas prices being so darn bad I have cut back on all our running! So just maybe once or twice a week and the rest of the time it will be walking around our neighborhood or just being outside here at home.

Oh yeah, one more thing. I will be going to court in June for Child Support..and without making a HUGE thing here I will just say that it is non-exhistant for a long time now and it is time to do something about it. Hopefully it will happen!

School for me is going fine, slow but fine. I am finding it harder to study with it being so nice out and wanting to spend time outside with Lily BUT I am plugging along. Grades are good but it is just going to take me ALOT longer to finish than I had planned but oh well...I will finish and that is all that counts for now!

Ok..gotta hit the hay here. Sorry it has taken me so long to update and also sorry this one is so choppy...HUGS to all! (ps..hi to Laurie..will you be at the conference???).

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