Sigh

I've been having just one of those I feel stuck in my life days. I love my husband, I love my son, I even love my crazy dogs. But what if I could go back and change my major decisions. What if I went to school in Canada? What if i stayed an Econ major? What if I studied abroad? What if I never left the cadets? Would things be easier or just different? Down here in middle of nowhere VA I feel like Im missing out on so much. The world is flying by and Im stuck in pause. I keep looking for my play button but I feel as if Im afraid to push it. I hope I push it soon or I may be stuck forever.

Murderers!

My dogs killed another deer (they killed one last year around this time when they were only six months old). Lucky me this time I got to watch the entire thing because it was in the backyard. As usual I opened the door to let Hans and Heidi out. I noticed Hans sprint out the back door and Heidi follow close behind leaping of the steps. So I looked out to see what could have gotten them in such a tizzy and there's two does in the backyard. I continued to watch because I was worried that one would lure Hans out of the yard and that I would have to go chase him down. Instead as the deer were fleeing, Hans close behind, I see one take a huge leap and the other run smack dab into our little fenced in area. It didn't have a chance. Hans kinda nipped at it but Heidi went straight for the throat. I was in shock, it was like watching the cheetahs take down a gazelle on Big Cat Diary. Except it was my backyard and my dogs.

I weakly called Jarrod. He threw his boots on and ran out to get them off their fresh kill. Luckily as older and wiser dogs Jarrod was able to get them off the thing quickly, but not in time to save it. So then we had to call the Sheriff's office to report our little murderers and then hang the thing in a tree since Jarrod had to get to work.

Bleh!

George is no longer interested in baby food. I could just cry. It is so frustrating. Now when I try to put the baby food in my mouth I get a weird face, he spits it out, and what he doesn't spit out he gags on. Why is it every time we get one step forward we seem to go 2 steps back!?! At this rate George is always going to eat through a tube. While its nice for colds, giving medicine, and keeping him a healthy weight, dealing with all that is worth it for him to be a regular kid. I want him to be able to eat at friends houses and during lunch at school.I just pray that this isn't an unrealistic hope.

Peaches for Free

Is it weird that I almost feel upset that my son is not a huge fan of peach baby food? Today he tried peach for the first time and the response was meh. He even pushed it back out like what is this stuff you are giving me. I LOVE peach baby food. I was still eating it every now and than at like 12 and I am pretty sure that I will be finishing any leftovers that he has from the stuff now.

It was so exciting when George did well at the swallow study but now faced with what we are actually able to do, it just seems like so little. Every bite is such a huge deal but its such a little thing. And its so depressing when he doesn't seem interested at all. He looks at me like why are you trying to put this stuff in my mouth. The dread comes pouring back in that maybe he's just going to have to eat this way for the rest of his life. Maybe I'm going to have to say "No rough housing you might tear out George's button" when he wants to play with his future siblings. Maybe he wont have siblings.

We are thinking we want more children and my doctor gave me the name of a geneticist with Boston College to get in touch with. That was two weeks ago. In a way I'm terrified of the minute possibility that maybe, just maybe this is a genetics issue. What if this is the only kind of child I can have? What if every one of them is a major risk for having some severe medical issue that makes it impossible for them to be just like other kids. Than what? Do we go forward fingers crossed that the next child will be physically fine? I don't think I could handle another NICU/PICU baby. Those first two and a half month's where George lived in the hospital was so hard. Every day I fought a nervous breakdown. All of a sudden your a mom and now you are responsible for another human being. In a way that other mom's luckily don't have to be. You are the one saying yes I think we should do this surgery. And every day you visit this child that barely feels like he's yours because all your contact is so sterile and observed. And you are still so naive that you think the doctors and nurses know what is right and what is best because they went to school for it, they see it every day. It took me a while before I realized that while they may have seen other children with conditions like my son, they weren't my son. Every child is going to be unique. There is no one size fits all with health care. By the time I went back to the hospital I knew that I know George better than any of them and while they are trained professionals and I should take into consideration their knowledgeable ideas and suggestions, they are not going to be 100% right and most of the time it is just an opinion.

To think if I had listened to 75% of the the doctors I worked with George would have a tract right now. And for what? The off chance that he might need it. He may be noisy but he breaths just fine without one. The last thing I needed was another foreign object in his body that I had to watch for complications just because there is this slight chance he may need one in the future. That is one thing that I am proud I gave my son a chance with. That I fought those doctors because I knew he could do it. While I understand that for some children (especially other mylo, arnold chiari sufferers) this is something they need to survive, George didn't. And so many doctors ignored that fact and got so caught up in well he's probably going to need it so lets do it now so he doesn't have to have anesthesia later. If all the doctors had said yes it would have been a different matter but I paid attention to the pulmonologists who told me of the constant repairs and the ENT who held out as long as possible. And look at George now breathing on his own and trying peach baby food. :)

My dead music

Lately I find myself hating music videos and performances. All I can think is the regretful "I could do that." But there are plenty of reasons why I couldn't. Number one being my fear of rejection. Being in music involves constantly being rejected. Even those who have "made it" in music are constantly being critiqued and put down by critics and regular people alike. You can't please everyone. Starting in music is rejection after rejection in auditions and performances. There are very few who never get to feel that. And vocal music is so personal, its your voice. Something that can only be changed so much like your hair or your looks. Some people are never going to look good no matter how much they work out, they will never be a model. And they can't change that. Same with people, no matter how much you practice or work with vocal coaches, there is a limit to what you can achieve with your voice. After a rejection in my college's vocal program, being told I had no talent by a well meaning father, and being rejected later by an a Capella group. I was done. I gave up the only thing I was ever passionate about in my entire life. Now I feel lost. I have nothing to do. I live in an area where music and singing groups are few and far between. The only person I perform for is my son who cries if I sing anything in a real voice. I miss music desperately. I will always be plagued by what ifs. What if I had auditioned at other schools, what if I had auditioned for a group my freshman year, what if I had tried out for American Idol. Probably things would not be any different. Maybe I would be teaching voice lessons or singing in a church choir. I don't think I ever had the ego to make it, to believe that what I do is the best, to not feel nervous or self conscious when I sing in front of others. But either way I will always have to live with the what if's and I hope that I can use that to push my kids to at least try. Sometimes it is just better to know you tried your best and failed instead of living with the nagging what would have happened

Babysteps in food

My son George has difficulty swallowing. Because of this he eats through his MicKey button which looks like the valve you use to blow up a beach ball or pool floaty. He looks like a little inflatble baby. :) We tried to get him to drink from a bottle for month's only to find that he couldn't handle the thin consistency and was aspirating. For a while we had to put the whole eating by mouth project was put on hold but once George hit 6 months he was old he had reached an age where baby food could be a safe choice. We started giving him small timid spoonfuls of sweet potatoe, cartot, apple and banana; terrified that all this time that food was sliding into his lungs. It is really difficult to tell because when George aspirated milk it looked like nothing bad was happening, it didn't bother him at all. I had almost completely given up hope of George ever eating like a normal kid. Which for a food addict like myself is unimaginable. Than last Tuesday we had a swallow study. He did great! We watched the radioactive carrot baby food go where it should on the xray screen. And when he wasnt swallowing he was protecting his airway by pooling the food in the back of his throat. My little chipmunk was eating! While he still can't handle drinking anything, the thicker baby food will help him to build up the muscles in his mouth and throat so that a cup of milk can become a possibility. We are so excited and my goal to have his button removed by preK.

Yay for change!

I feel like it's Christmas. By the end of next week I will have a nice new couch in my living room. One that will fit two people sleeping comfortably and yet not massive (which is key because my living room is tiny). It's a Bobkona sectional in sage and I hope that the color is what I what. It's just so scary buying things online. Also my husband let me purchase a countertop dishwasher today! After over a year of handwashing dishes I am so tired of it. And my hands definitely feel the pain from it. No matter what dishsoap I use they end up dry and chapped from the hot water. A dishwasher will be wonderful for sanitizing the millions of things that I should be sanitizing for George. After looking at lots of products and websites I decided on this model that fits 6 place setings and is an Edgestar. We will hope that it works as well as it does for the other people who reviewed it. I didn't find a bad review about it other than a complaint that it was a little bit blocky. But its not like you can fit 6 place settings in a toaster so I expect big and blocky. And lastly my wonderful husband has been cutting tiles to finally get me started on tiling that bathroom floor. So I am super excited about the progress we are making! (Especially after a long lull due to sickness and snow) Yay for good change!

A new year

Yes this post is a little bit late and yes i don't do anything but sit around on the computer in my jammies but it has taken until now and I think I am ready. It is time to start blogging, working out, actively looking for a job, joining some art classes. I need to stop being soo passive in my life if I want to start having a change for the better.

My son is doing great. He is almost completely off oxygen support, his strider is almost completely gone, he rarely wretches, and he he may soon (fingers crossed for Tuesday) be able to take food by mouth. And through all the pain and hospital stays he is such a happy little guy. So I should learn from George to just move on and live life no matter what hardships come my way.

I need to create and change and earn something myself. If I lock myself into being a mommy only I might lose myself. Then when the kids move on and have their own lives I will have nothing. So the time for change is now. Before the craziness of school and teams and after school activities. While the ghost of old me hasn't quite drifted away. I'm ready for a change (and one that actually happens unlike what we were promised by certain politicians:) )