Thursday, August 30, 2012


Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices.
Paul Tournier

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!

Saturday, August 18, 2012

My thoughts on certain subjects and therapy equipment

Before I get on my pedestal I wanted to show you guys a picture of some of the therapy equipment Jude has received.

This is Jude's new lift

and this is his new stander

So as you can see my house has a lot of big equipment in it, but we are sure thankful! He cannot use his stander until his new leg braces arrive, but they should be here soon. I cannot WAIT to see his wheelchair either. It's funny how I went from being up set my son is in a wheelchair to being really excited to see his new equipment. I guess time marches on.

Jude still has a a nice size swollen area on his neck which we think is due to his horse collar rubbing on him. It has gotten a bit concerning so we are going to take him to the doctor tomorrow to see if it needs to be lanced. I am sure it will be quick and everything will be fine.

Now I am going to hop on my rhinestone pedestal I am on so much. I have two issues I wanted to tackle tonight because they have been weighing heavy on my heart. I seem to be having an issue lately with how judgemental everyone has become.  First, I would like to tell you about Xander. Last week my husband came home from work literally in tears. He said that an old friend of his four year old son had been transported via care flight to Cook's children as a possible drowning. He told me what an amazing guy his friend Chris (dad) has been and he had no details of what happened. My mind raced wondering what could happened. Small details trickled in and we found out that the little boy had saved a three year olds life. I then really began wondering what happened.....but never one passed judgement because I truly believe it's NOT my right! I was not there, I didn't know what happened, and I had no right making any assumptions. Days later sweet little Xander lost his fight and went to heaven. My heart broke. Mike had not seen his friend in years but he cried off and on all night. He finally came up to me and struggled with his words. He said "Sometimes I think we are lucky". I replied, "well that's good...but why?". He replied "Because since Jude's stroke we have been able to grieve for his loss everyday......we have prepared ourselves the best we can for anything, but people like Chris and his wife that have a normal child ripped away from them just suffer so much". Mike meant well and I just hugged him while he sniffled. We went to the memorial for Xander and released his favorite color balloons.

Mike saw Xander's dad Chris at the memorial and hugged him tight. His mom (who was with Xander when he died) was not there. I tried to wrap my brain around what she was feeling...sadness, grief, .....guilt. I remembered that horrible feeling in your gut when you lose someone so dear and how nothing seems to help it. Misty (his mom) posted on her facebook that when the time was right she would explain what happened. In the mean time the media posted a news stoy of the drowning and ......self righteous judgemental jerks attacked the family. They said CPS should be called, the other kids should be removed, etc etc.....never knowing any detail. People forget it takes merely seconds for a child to drown. It's not like the movies.........they do not splash around and scream help......drowning is a silent killer. I once had a friend who was in the pool with her daughter and noticed her daughters lips turning blue. She realized her daughter was tired and had been breathing through her mouth (which was under water) vs her nose (above water). She pulled her out just in time. While at Xander's memorial above the media released the following video because they were so touched by Xander and his family. After Xander's funeral his mom found te courage to post her story.  I had originally been informed the kids were playing a fish game, but she went throughout the whole day. Tears flowed as I read her story. It's turning around in the store after a split second and your child is gone, it's letting them go on their bike and they break their arm, it's a tragic horrible accident. It happened and rather than judge we should supply them with our prayers.

My next subject is going to be rather controversial, but I am approaching it anyway. I would like you to read and watch the following information and then clear your mind before you read further  This has been a large topic in the pageant community and one that Emily got wind of last night. So I approached the subject. I said "Emily ........ can you imagine that happening to you." She said "No because daddy knows I love pageants"( Emily has a very supportive father). So I sat there and wondered about Emily being in that courtroom and like I said I want you to clear your picture an attorney talking to Emily.

"So you are a five time presidential service award winner? You have a 3.8 GPA. You started your own non-profit corporation at the age of ten because your brother suffered a massive stroke? You have made more than 5000 boxes and raised more than $50,000 for your charity. You have won the Barnum Hero Award, the Pediatric Nursing Associations sister of the year, Morgans Wonderlands walk of fame award, etc etc etc all before even going to high school........right. So Emily can you tell me what you and Maddy Verst have in common".

Emily's response? Would be "I have been in pageants since I was 17 months old!" Which was truly her response in an interview she gave to a reporter who said "How are you so well spoken at such a young age?".

Now let me clear something up. I do own a pageant system called Regal Princess. Did I like the Dolly Parton outfit Maddy had on? No.   Do I like the fake teeth, large fake hair, and the over the top make up? No.   However, that's their decision not mine. I don't think by any means she was sexualizing her child because it was all in fun. The Dolly outfit was a replica of an outfit Maddy's mom WORE in pageants as a child. This is a mom who truly loves her child she just made a poor decision. They are a good family loved by many. If the judge rules in the dads favor that means a man who was estranged from his child, didn't pay child support, has a lengthy criminal record, and doesn't even know his kid WINS solely because of the child's extra curricular activity. So here is another tid bit of info. I don't like cheer leading for children........I think it's dangerous and the outfits are to skimpy, but again that's my own personal preference. It doesn't mean I don't stand in awe when I see these amazing kids doing full gymnastic routines for talent at my pageant. It just means I don't choose to put Emily in it. I also don't care for peewee football, but again that's my choice. It doesn't mean I condemn ANY mom or dad that chooses to let their children try those sports. I figure if the child gets old enough and doesn't like them they will hopefully speak up. Then again they may love them just like Em loves pageants.  Emily has begged to go on that stupid reality show Toddler's and Tiaras. I have explained to her time and time again that she isn't a toddler in a tiara and that they just edit, cut, and re-cut to get what they want.....for ratings. Emily insists she could get them to show the positive side of pageantry, but I just explain to her she is still naive. What they fail to show is........

Best friends that met when they were tiny babies and grew up in the pageant world.

Beautiful opportunities to recognize a true queen who just wanted to be a princess for a day

They don't show beauty queens helping their community

or a once ten year old Emily speaking to an entire audience about the benefits of community service and accepting her diamond award for her hard work.

and they surely don't ever show the natural photo's Maddy Verst has taken to enter in the toned down pageants. A picture showing a radiant beautiful well taken care of little girl.

I want everyone to now stop and think about what would happen if a judge started telling parents they cannot participate in particular extra curricular or everyday events. Maybe what happened to Bai MacFarlane? Bai MacFarlane (sahm) lost all custody of her four boys because she wanted to continue to home school and wanted to continue to raise her children Catholic. Her husband Bud had found a young girlfriend, sued for nofault divorce, and then found a judge that didn't like Catholics or homeschooling.

What about cheer leading, dance (eeek dance moms), football, etc. There is no end to what they could take your children away for. It makes you stop and think. You may not AGREE with something, but that is your opinion. Emily has done pageants for years and she is a well read, well spoken, well mannered, compassionate, and loving girl. Does she have her faults? Sure...she is messy!!! However, she is a GOOD girl!

The world has lost many good people due to other people's opinions and judgements. People in our country are so easily manipulated by pictures, edited commentary, or edited video. From drownings, to pageants, to home school, to more. Yet they weren't there when it happened, have never attended an event in question, or have no personal relation to the issue.

Tuesday, August 14, 2012

A little update or two

Well I have not posted in a really long time. I have been super busy and I guess I just haven't emotionally needed to post. We are doing well! Jude is marching right along and even has all new therapy equipment. He received a new stander, a lift, and a new bath chair. The only thing we are waiting on is his new wheelchair. We have noticed that Jude's front teeth are turning very very yellow. I really believe this is from his breathing treatments we have twice a day. We brush his teeth really good, but the medication seems to be destroying his teeth. Granted they are baby teeth, but it still concerns me.

Jude's sister set him up his on facebook page. We have been updating it with video's, pictures, and more. So if I do not update my blog you can always like his page and see what Jude has been up to. There is a really precious video on there from last night showing how Jude plays with me.!/pages/Jude-Ortiz/183070828492079