Wednesday, August 29, 2012

School, ruffled feathers, and new seizures

Wow a blog from me and guess what ............ it's kinda bitchy! lol

Yesterday was a day mixed with a lot of emotions. My kiddo's were going back to school again. Emily was (as usual) very well organized and had everything ready to go. It amazes me how that child can be so efficient at getting places on time, but have the messiest room in America! Overall she did very well yesterday. However last night she did have a slight meltdown on if the new theater teacher will "like' her or not. She spent about forty five minutes in my room debating with me on why it's important that the theater teacher like her. I kept replying "Emily, all you can do is give her your best and if that's not good enough then try again at another time". I think she was overly tired from a very exciting day. Mike finally booted her out of our room and made her go to sleep.

Jude also had a good day yesterday. I think he was very excited to go back to school and to see his teacher Mrs. Ruben. Mrs Ruben just adores Jude and always tells us how she appreciates the opportunity to get to know him.


Once I got home from work I had paperwork waiting on me from Jude's school to fill out. First I was instructed that any time Jude is out of school they need a written note from either myself or the doctor not a phone call. Fine I will comply and I won't even hope on my soapbox about this today. Second, we had to fill out paperwork about Jude's capabilities. The questions resembled: How does your child communicate? A. Not at all B. Sound C. Telling you what he wants, etc. By the end of the five page questionnaire I asked Mike if I could just draw a big finger on the front flipping them off. He chuckled and said "what do you expect them to send?". I looked at him and replied, "I have no idea what I expect. There isn't anything wrong with the questionnaire it's just the way it makes me feel". He said "I totally get it". It's nice having someone that "totally get's it".

I have been very irritated with people in general lately. Isn't that sad to say? I constantly remind myself that people are not living in my shoes and therefore cannot relate to how I feel. I cannot expect them to know what it's like to have a disabled child. Despite my love for Jude his medications, feeding, seizures, etc do not change. I have found myself getting very angry lately when people tell me they are tired or complain about their children. I get even angrier when people cannot attend events that are SUPER hard for me to attend. People that state they may not be able to "help" out with a function because their life is hard. Your life is hard? (insert me GREATLY rolling my eyes). It's the little things and the little comments that are really really getting to me. Which is strange...why now? Why after four years? Don't worry I remind myself that ours family has nurses, good jobs, etc and our life could be really really different. Shoot, Jude may not be here and that would be AWFUL! So don't think I am just sitting over here stewing in some chair I am just saying I get my feathers ruffled a bit. I am learning to smooth my feathers back, but a few stray ones pop out.

With that being said Jude is now experiencing absence seizures . This is a new development and I put a call into the neuro about it this morning. I am waiting on their return call. Sometimes they are triggered by a noise (ie - Bigs barking) or sometimes there is nothing that triggers them. This morning Bigs barked and I caught Jude in his bed just staring blankly at the side of his bed. I called his name several times but he never moved. He also looked like he wasn't breathing. However, Charlotte stated that many times they breathe shallow during a seizure. After it was over Jude gasped for air and smiled big. Smiling and laughing is his ending reaction to his seizures. He also looks rather pale to me lately, but that may be just a lack of sunshine.

Jude's fourth birthday is this coming weekend. We are so incredibly blessed  One more year until he surpasses the age the doctor told us he would probably "make it "to. I often hear from mothers of special needs children say they were given a range of time in regards to their child's life. This used to anger me that the doctor's did this..........used to (see I have grown through this!). Now I can see that the doctors only do this to help prepare the parents. However, I agree with Jude's neurologist that no one can put an expiration on Jude, but Jude. You know what's funny? Everyone always tells me "Jude has come SO far and has done more than any doctor ever expected". As much as I love Jude let's be he hasn't. I don't mean that to sounds harsh, but he hasn't. He has done exactly what Dr Riela said he probably would do. Dr Riela's main goal has always been to keep Jude healthy so we can enjoy him as long as possible and he has done a great job of that. Jude receives in home and school therapy multiple times a week. He has made some strides, but not a lot. The difference between now and when Jude was born is that our okay with that. We work with Jude, we try to help him progress, but we accept him just the way he is. We are very thankful for his smile, his laugh, and that he knows who we are. Some people may want more with their special needs children, but I am honestly perfectly satisfied. Jude is perfect JUST the way he is!

1 comment:

Kim Stidham said...

That was beautiful Jenn...simply beautiful.