In a conversation about former South African president Nelson Mandela, Clinton talked about Mandela's ability to forgive his captors."Didn't you hate them?" Clinton recalled asking Mandela privately, referring to Mandela's final steps as a prisoner walking to freedom."'Sure I did,'" Mandela said, per Clinton. "'I felt anger and hatred and fear. And I realized if I kept hating them, once I got in that car and got through the gate I would still be in prison. So I let it go because I wanted to be free.'"I had not heard about this conversation between Bill Clinton and Nelson Mandela (took place a couple of years ago) until I was listening to the radio tonight. Don't laugh at me, but I was flipping through stations and heard Delilah talking about this so I parked there for a bit. She didn't quote word for word but she put it in her own words. She talked about how so many times in our lives people will let us down, hurt us, intentionally knock us to our knees, make us mad, bitter etc. Most people harbor that anger and bitterness in their hearts for a long time-possibly forever. And for what reason? How does that help you? All it does is give that person or situation power over you and your heart. Hmmm....that got me thinking! I am that person. Quick to anger and hold on to that anger until it turns my insides ugly and seeps outward and makes me a miserable, bitter, and cynical person. Not the person that I want to be and definitely not the role model that I want to be for Macy Jane. I would be lying if I said that I don't struggle with this daily....sometimes hourly :) Some days I just wish that I could flip the switch inside of me and be this person that never lets anything bother them and is always happy go lucky etc. However, I am who I am and can only work to be a better person. I've never really thought about how letting the angerness, bittnerness, and hatred overcome you will leave you in a self created prison cell and allows that situation or person complete control. Life is too short to go through it a miserable person! I know that I've missed out on many things because of my stubborn self, but hopefully I will continue to have these revelations periodically to help keep me in check. This past week was a long one and in many ways a difficult one for me, which I do not want to discuss or want sympathy for, but I felt all of these feelings building inside of me again....thank God I realized it before they overtook me again. This note was simply for me so that I can look back on it perdiodically and remember it and keep myself in check. I'm sure I'm not the only person that struggles with this so maybe this will help someone else as well.

Where have the past 2 years gone? It seems like yesterday in some ways that I was on my way to the hospital to have my sweet baby girl. Yep, my sweet baby girl is now a little girl.....there's no baby about her. How exciting to me!I was talking with a few girls from work the other night and they were asking me questions about how MJ is doing so I figured it was time to do another update on her progress. Last week, she officially took her first steps without any prompting, assistance, or therapists in the room! I was sitting on our loveseat and MJ was climbing on and off the big couch. The next thing I knew, she was walking in between the couches to get to me! She did it a few more times for me, long enough to get a picture of her :) Each day she continues to take a few steps more and I'm sure in another month or two she will be taking off! She is already figuring out that walking on her feet is more comfortable and easier than crawling on knees. Today, she started just holding on to the walls to get around the house (unless I said the words "do you want to watch Elmo? Instant super fast crawling to the living room :) We have been waiting for a year to see her do this and what a long way she has come! Awesome considering she wasn't even pulling to stand until January of this year! One of the "problems" that we will have to deal with is the fact that MJ has way too much flexibility in her joints/muscles-specfically in her ankles. She tends to stand with more support on the inner portion of her ankles and because of this, she doesn't stand on a flat foot. We are in the beginning stages of having AFO's made specifically for her (AFO is ankle foot orthosis) legs. When I was first approached with them, I pictured Forest Gump and the awful looking metal braces on his legs and the kids making fun of him. Once again, I was saddened for MJ because on top of her scars etc she would have to wear braces for however long. I have done some research on them since then and now I have a different mindset. They aren't as hideous looking as they once were and even if they were, they are what she needs at this point in her life and this too shall pass and I can only try to teach her to be confident and walk with her head high no matter what adults or kids say about her (yes....there are some immature adults out there that still make fun of kids with physical challenges) because God made her exactly how He wanted her to be and she is special. (however, she does have a red tint to her hair and I'm afraid the attitude to go with it :) I think her PTA is still leaning more towards making her have the AFO's that go up to the knee, but I am secretly hoping that by the time it comes to actually having the molds made, she will no longer be hyperextending her knees. I think in watching her in her day to day activities that she doesn't do it enough to have it be a problem long term and that she really doesn't do it very often anymore. However, I am not the expert and if the experts still think she needs the ones for the knee, we will go the route. Anything to help her! That is a prayer request though that her muscles continue to develop and become stronger and that she will only need the braces for her ankles. When she has shoes on, obviously I cannot see her ankles but she walks on her feet flat. Put sandals on her though and its back to walking on the inner aspect. I guess only time will tell :) If she does have to have the longer ones, I pray they come in Elmo because I think that is the only way she will wear them. Her PTA Kerri has a pair that she tried on MJ a few times and every single time she used them MJ would scream and cry until they were removed. It kind of upset me because she was so upset that I couldn't even console her, so we haven't put them back on since then. Maybe once we have some that fit her perfectly she will be ok with them. Baby steps baby steps with her :) I am really hoping that by the time we go to Disney at the end of July she will be walking primarily on her own without too many accidents. The second question that someone asks me no doubt on a weekly basis is "Is she eating yet?" Eating? Yes. Eating enough to sustain life or even resemble a full meal? No. So, I usually just answer no and that we are working towards it. A lot of people do not realize that for whatever reason over the past year she was sick every other week (no lie-it was like clockwork-every other Sunday it started) with throwing up. It was a 5 day cycle where she would throw up once on the first day, two or three times the second day, and the 3rd day she would wake up throwing up bile and would proceed to throw up pretty much non-stop for 2-3 days and she would do nothing but sleep for those days. We could only give her pedialyte and hope she kept most of it down, which would explain why for several months she didn't gain any weight. Thankfully, she has not done this for a month now! However, instead of throwing up every other week she now throws up every morning after her first feeding and maybe another time during the day depending on the day. The difference is that after she throws up a little bit she is fine and she will play like nothing has happened. The past year was very hard watching her go through this and having the doctors tell us it was her reflux. We think we have a pretty good theory in that her teething aggravated her reflux and with each new tooth came a new episode of puking. Most people think we are nuts when we say it, but if you count 2 weeks before she got her first tooth (on her first birthday) to a month ago, the numbers add up with the amount of teeth in her mouth today. Maybe we are nuts but it helped my mental state to blame it on teething! All of her primary teeth are in (the last one just popped through today!) with the exception of her 2 year molars and tonight I made a discovery after she fell asleep and she has one of them already! Maybe it isn't teething, maybe it is. All I know is that she is 95% better now that she has all of her normal teeth in........Okay, I chased that rabbit for a while, now back to her eating. Here in the past few weeks, she has begun to feed anyone and everything, including the dog ;) She will even feed herself pretend food and some real food. In the past, she has eaten a half of a jar of baby food for me in one sitting and that's it as far as actually consuming a larger quantity. The days of me being able to give her a bite are OVER. Her independence is starting to appear and she wants the fork or spoon and she wants to do it herself. Otherwise, you get violent head shaking no and pursed lips. Thankfully I am one of those people that does not care if she makes a mess of me, herself, or anything in my house. On any given day if you come to my house the living room and kitchen will look like a playroom and Elmo will be on the TV. (don't worry, I clean it up every night only to repeat the process the next day!) She will mainly lick things to taste them and she will swallow liquids and pureed food with a few lumps. Two things that she will always taste are white cheese dip and refried beans and chips. Anything that is very spicy or has a bold flavor she loves to taste. She will lick the seasoning off of anything and then try to feed it to you......yummo! lol. She also likes potatoes (baked or mashed) Within the last week, when I fix my plate she will climb up right beside me, steal my fork or spoon, and proceed to stick it in my food. Last night, we had meatloaf and baked potatoes and she actually got a little meat in her mouth and didn't freak out (remember she doesn't like solids) and she swallowed a little bit of it, more than once. The potato did she ok with as well. Eventhough she isn't eating large amounts, at least she is putting things in her mouth without making herself throw up. This time one year ago, if I fed her anything by mouth she would freak out and throw it up. We have made huge progress, but to those that have never dealt with this it seems like we are moving at a snails pace. I read a note I wrote several months ago and in it I talked about how if I put certain things like carrots in front of her she would make an awful face and couldn't tolerate the sight of it. We have certainly moved on from that, I don't think there is anything that I set in front of her that she immediately frowns at. She may not touch it, but she can tolerate the sight of it, which is a step on the ladder. She still has speech therapy on a weekly basis and her speech is starting to come along. She says a few words and actually says them in appropriate situations. Her vocab consists of Mama, bye-bye, hello (sometimes it comes out wrong!), hi, elmo, and tonight she brought me a book and said the word but left the "K" sound off...she said it more than once so I counted it as a word. She knows a tiny bit of sign language such as drink and more and all done. She would know more but that is honestly my fault. I haven't learned it and what she has learned she learned from Shannon, her Early Intervention specialist, and Jenn, her speech therapist. I have a book of signs and some handouts and I am trying to learn some to teach to MJ to help her communicate until her speech is caught up. Her ST is confident that she is on the brink of putting two and two together in her cute little head so I hope to hear a lot more words in the coming months. I can say this, she babbles all of the time now which is a new thing as well. Today, I took Macy Jane for a completely new experience. We attended a feeding group session at Lebonheur's Early Intervention and Development (LEAD). I wasnt sure what to expect or how MJ would react, although I had a suspicion. We walked in to a room that had a table setup with high chairs and booster seats and there were 3 therapists and 5 kids. The therapist gave each of them a washcloth to put in the soapy water to clean their places, and started by putting a chip in front of each child. MJ would normally pick the chip up and lick it but today....NO WAY! That bottom lip came out and she the poochy lip disease took over. I wanted to laugh because she looked so pitiful in the beginning with that expression, but I didn't. Instead, I told her to turn around and I just put my hand on her back to let her know I was there and the boogy man wasn't going to get her, lol. Next, she put a spoon of BBQ sauce in front of them followed by baked beans, diced hot dogs, ketchup, and juice. It was interesting to me to observe the other children, who were all under the age of 3. One little boy would touch everything and had everything all over him, but would not put anything in his mouth. Another boy would bite the chip, but that was it and he wouldn't drink his juice he would blow bubbles through the straw. Each child was different and it REALLY helped me to see the other kids. I have never met another child face to face that has oral aversions and is g-tube fed. It is hard having friends that have no idea what it is like to not be able to just feed your child, so it was refreshing to actually see other kids in person that have struggled just like MJ. It kind of gave me hope that you know what everything we are doing is working towards a specific results and we are getting there. As far as Miss Macy Jane's progress today.....she sat back and observed it. She was very quiet but watched everything intently. A few times she cried, like when they all sang happy birthday to one little boy :) Towards the end though, she really enjoyed watching the boy blow bubbles in his juice. She doesn't know how to blow bubbles yet or drink out of a straw and usually if she sees a straw in a cup, she takes it out and plays with it in her mouth. Today however, she kept the straw in the cup and held it in her mouth like she was going to blow bubbles. To me, that was a step forward. Thanks Ben (I think that was his name) for showing that straws in juice can be fun :) Hopefully we will be able to start going there weekly, I really think she will benefit from seeing her peers in action. Watching her today reminded me a lot of myself. Growing up and even today, I tended to be the quiet girl that would observe everything around me without saying much (unless I know you really well ;). I don't know yet if this is going to be her personality or if it is because today was the first time she has been in a room with that many kids for that long and she was scared, fascinated etc. Time will tell, but I really hope that she doesn't have all of my bashfulness/shyness. Towards the end of the group she was waving bye bye and telling the therapists bye and started touching her chip. I'm sure as time goes on she will be more comfortable as the newness wears off. It also showed me how important it is for me to start taking her to church with me and allowing her to stay in the nursery and having playdates. She needs that social interaction....before she goes to preschool at age 3 (whew....I still have another year to prepare myself for that day!) The last area is of course her heart health. She had an echo back in March and at that time everything was stable and we follow up on July 1st with another echo. She will either have another cath at the end of the summer or during the fall, depending on how her echo looks. The heart cath will give us an idea of when her next open heart surgery needs to be. Praying for a few more years on that issue! :) So far, she doesn't show any outward signs of any complications. She has as much energy as the next toddler, so much so that she has pretty much given up taking naps unless she isn't feeling well or she was up way past her bedtime the night before. As for the DiGeorge Syndrome......we still aren't sure how much of her delays are from a 6 month hospitalization or from the syndrome. Most everyone thinks the hospitalization is the culprit since she is advancing and catching up on her own. Each day she shows me in some way that her cognitive skills are pretty close to target and she also catches on to things pretty quick. I think at her last eval she was 5% behind mentally? I may have that wrong, but it was so low it wasn't anything to worry about. Pretty good considering her brain didn't have adequate oxygenation until she was 6 months old :) I know that was a lot to read, but there's a lot going on with my sweet pea! She is SO much fun these days or either I am still a kid at heart. I love curling up on the couch and watching Elmo or some other show with her, playing baby dolls, reading books, taking her around the neighborhood or to the zoo etc. She is definitely an outdoors type of girl......loves loves loves to be outside. She also likes to accompany me when I go shopping. She recently discovered the shopping carts at grocery stores that have the little cars on the front....she likes those but I have to be careful and not pull too close to an aisle....haha learned that the hard way one day ;) As always, please remember her in your prayers. Things to specifically pray for for those of you that like specifics: 1. Her heart will remain strong and her pulmonary arteries open and growing 2. That her oral feedings will increase to the point that we can start to decrease the amount of pediasure I give her by syringe 3. That her muscles will continue to strengthen and she will be walking everywhere solo 4. That her speech will continue to improve. I think that is all of the major stuff for now. I do appreciate all of the questions, comments, and concern for MJ. It really does mean a lot to me and I am so excited to see how God is going to use Macy Jane's life...it is quite obvious that she was put on this earth for a specific reason. (besides being my pride and joy!) I love my life as a mommy and each day that I hear her wake up and say Mama just melts my heart and instantly lifts my spirits : )