Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things. I know it has been a while since the last post. All I think about and focus on is Townes and Sazie Gee. I spend a majority of the day focusing on T, and SG spends a majority of the day demanding my attention. Thank goodness we do have nurses to look after T, but it still takes two of us to do a lot of the things he requires. That can be really hard with SG screaming at the top of her lungs ladies and gentlemen (which usually means she has crawled on top of something high and is going to fly off of it), or she needs to go to the bathroom and takes off out through the doggy door. Naked. Unfortunately, our nurses are not here to provide relief from all that. A few weeks ago my Godfather, Tom Kirschten, passed away. My mom had called to tell me the news, and of course, I was upset. SG walked up and asked why I was sad. I told her it was because Tom passed away. SG didnt understand what passed away meant, so I said that he died. With a very concerned look, she said, Like Jesus? Did him die on the Cross? I couldnt help but smile and I told her no, and that Tom was at home when he died. As soon as I told her this, her face scrunched up and turned from concern to absolute confusion. Then, she said Oh. Well, him sho aint Jesus. All I could do was laugh. Tom so aint Jesus, but he was one heck of a Godfather to me, and he certainly is missed. Jeremy has been busy making friends with everyone that lives within a five mile radius. He has been rebuilding his dads old motorcycle, and has met someone new with each test drive. It has not been by choice that he is meeting so many people, but I guess you kind of have to make new friends when you break down in front of their houses. He had me really worried about this motorcycle business when he came home one day with a new helmet and a bruised ego. He was trying on helmets at some store, and couldnt find one that fit just right. So, naturally, he asked for help. He put on the helmet, went up to a guy that worked there, and asked if the helmet looked right. The man told him yes, it did. Then politely let J know that it might fit and look even better if he stopped trying them on backwards. Im proud to say that he now has the bike running correctly, and he has learned how to wear his new helmet. The right way. Townes is amazing. This little boy is the strongest, toughest little boy I know. He gets stronger each week. He has infusions and physical therapy on Wednesdays, occupational therapy on Mondays, gets helmet fittings every other week, and regular dr visits here and there. Soon we will have someone coming to the house once a week to work with T on early communication and sign language. This should be interesting with SG running around like a maniac. T is able to kick like crazy, loves popping his vent off and putting it in his mouth so that his cheeks blow up like a chipmunk, and now has started moving his mouth like he his mimicking you talking. His last echo showed improvement with the function and the size of his heart. He is also getting weened from his vent. He is not on a rate anymore (which gives him breaths), and is slowly coming down off of the pressure. Monday he will have another swallow study to see if he is able to start on some foods. He has not done well on the past two swallow studies, and if he does not do well Monday then that is okay with me. Ive grown to love the gtube, except for when it comes out. Sometimes I think it would be easier if SG had one too. That child doesnt know what water is. If only I could hook her up to a feeding pump to keep some water in her. I believe it was Ghandi that said The best way to find yourself is to lose yourself in the service of others. I couldnt agree more. It is crazy how much I have changed just in the last few months. Some changes for the best, and of course some for the worst. I am 100% positive that Im not fun anymore, but on the other hand I am 100% positive there are some people that never thought I was much fun to begin with! I also cry. A lot. There is not a day that goes by that I do not cry over something. I cant help it. I can begin a normal conversation with someone, and when the conversation turns to Townes, I cry. If someone asks how I am doing, I cry. I cry because T is doing amazing, I cry because I am so proud of how far he has come, I cry because I am terrified of something happening, I cry because Im exhausted, I cry because I just want to be alone every now and then, I cry because I just want to do normal family things, I cry because at times I dont feel comfortable in my own home with nurses here, I cry because it has been a big adjustment going from two incomes to one, and I cry because I am simply overwhelmed with it all. I would be lying if I said I wasnt a little depressed. But, Ive learned to put on a happy face when needed. Ive also learned to keep my dry and awkward sense of humor. This past week we were asked if T and I minded having a picture taken of us at the hospital. I was finishing lunch and quickly put a black olive over my front tooth and smiled really big and said of course not. I think I amused myself and no one else. Thank goodness the PC posse has come to terms with knowing that Im not all there, and got tickled when they were taking their group photo only to realize I had slid in the picture with them wearing Alyssas white coat. It can take a moment to find those things that matter in life. Ive found mine, and its my kids and my family. I was told that I am jealous of other kids. I suppose I was at one point, but not anymore. Im happy with where we are. I know I get a little depressed at times, but I have to remember all the good things we have and how far we have come. We have a lot to be thankful for; the tears, laughter, and of course those awkward moments.
Posted on: Sun, 24 Aug 2014 02:11:10 +0000
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