The events that change us in a Heartbeat... but last life a time...

Originally posted Wednesday, November 24, 2010

Jennifer, a fellow PITA, recently contacted me about starting the bodybugg.com system. She was exactly what we both needed. After 100 weeks on the program I have become complacent. I have slacked off. I have gone back to emotional eating. No I have not gained back the 50 pounds I lost, but I have pushed myself to gaining 5 pounds. A small part was me going back to work and not having as much time to work out, but most of it was the change in a friendship, a friendship that started right after a huge life change I talk about later in this blog and the friendship began with exercising together. I am not sure if the friendship change was due to me working, or to something I did to offend her, or was due life changes she is going through, or just one of those things that just happens and eventually you just have to learn to except it and you move on. Either way it and the lack of motivation on my part to exercise regularly and stick to the bodybugg.com plan has left a huge void in my life.

Jen wanting to get into the bodybugg.com system to lose weight and be heart healthy, and this has reminded me of the reality of things. I chose this journey of heart health and weight loss was for my children. This is the entire reason I am on this part of my life journey and ultimately reminds I am still only responsible for me and the Primer Children who are not old enough to be responsible for themselves.

That does not mean I should ignore the children who are responsible for themselves, it just means I have a different responsibility to them today.

Today for my older children it is my responsibility to counsel them to make good choices, for my smaller children it is to make the best choices for them. Sorry IDEA in this world I don’t have the option to pick “appropriate”, I am going for broke and for “BEST”.

For those of you not familiar with my story beyond being a parent, a parent of four children, one of which happens to be a child with Autism, I am also a wife of a heart patient. 2 years ago on November 8, 2008, my life changed. I like to think it happened for a reason.

November 6th and 7th, 2008 Ed Primer had the flu. No one told us that the blood pressure medication he was on was a diuretic, and that you SHOULD NEVER TAKE IT WHILE ILL, and ESPECIALLY WHILE HAVING THE FLU!!! Long story short, Ed having the flu and taking his medication while being ill, knocked out his liver and kidneys. While most people including you cringe at this part of the story, I am here to tell you I am blessed and it really was a blessing in disguise. Little did we know at that moment in time your heart has three major valves that provide your heart the majority of the blood to your body. One of those valves provides more blood then the other two valves, should that valve be blocked to far, you are dead immediately!!!

Ed’s, at 39 years old, happened to be blocked at 90%! Part of this was his bad life choices; part was because he had radiation for Hodgkin’s disease at 18 from his chin to mid sternum. The fact that he had the flu, and ended up in the ER with kidney & liver failure, put a huge MIRACLE into OUR lives. Once they regulated his kidneys and liver, his heart would not comply. It made the doctors’ look and investigate further. It made them realize there was a bigger issue. BOTTOM LINE IT SAVED HIS LIFE!!! Without the flu and November 8, 2008, I might be telling a different story.

I might be telling the story of a family with Autism, whose father passed away without Life Insurance.

Fortunately, I am NOT, NOT, NOT telling that story.

I am telling the story of hope and change. I would love to be telling you all the story of Ed’s great change, but that is:

a) Not my story to tell

b) So far not happened.

Has he changed?

Yes and NO, he actually takes the supplements I tell him, but he has not lost any weight in 2 years. He has cut down on drinking, he has completely quit smoking (WHICH IS HUGE), and eats more salads, and eats 100% more veggies. Bottom line though he has not lost one pound, for that matter he may have gained some.
To this day, this scares the hell out of me. It reminds me that I am the one who is still responsible for a 10 year old, who is insecure and has puberty to endure, she doesn’t get the luxury her 21 year sister had with puberty, because we are no longer home owners, we are no longer not the parent of a child with Autism, we are no longer in control of our future.

Today, we are renters; we are the parents of a child with Autism. We are dependent on living where we live if and only if the neighbors are happy and content with us as neighbors and do not complain to the landlord. I am also responsible for her 9 year old brother who has Autism, who did not have the luxury of his 18 year old brother, who only had 11 vaccines on an alternate schedule because his mom worked for a Chiropractor who frowned on vaccines and she was afraid to tell him she was giving them to him.

It also makes it me remember the responsibility I have to my 21 and 18 year. I have the responsibility to make sure my 21 and 18 year old, my parents or siblings are not responsible to raise Emily or Austin. That responsibility is mine and Ed’s alone. If one of us has a health issue, the other is responsible to do everything in their power to protect the rest by making smart choices and trying to be as healthy as possible. SO here I stand alone with that responsibility on my shoulders.

I am 145 pounds, and I have slipped back into my bad ways. I have gained between 5 and 10 pounds, and I need to make myself get back to my personal weight mission, my personal health mission and ideal weight of 125. I have no one but me to blame or make excuses for me. Life changes, friendships change, I need to get over it.
My ultimate responsibility are to 4 people other them me, the people I gave birth too. Their names are Ashley, Nick, Emily and Austin. I owe 3 of them the most, and while they may feel that I fight for him the most, I hope when they become parents themselves they understand that I did the best I could with the options I had, and that ultimately I have tried to make sure they are not responsible for Austin. My goal for him is the same as my goal for them. I want Austin to be a productive part of society, not dependent on his parents, his siblings or the government. Ultimately I want them to not have to responsible for Austin. Unfortunately for him to reach that goal, it already has taken most of my time and resources. They may at times feel neglected, and they are RIGHT!! I am not a perfect parent, but bottom line I hope I do them justice and that they at the end of my life they are not responsible for Austin and they feel I did my job as a parent to the best of my abilities and I did not completely screw them up.
I HOPE THEY FORGIVE ME.

I guess my thought on how I had envisioned the direction this blog to go has changed , but it was a good productive direction to go with. I am not thankful that Jenn has been ill, but I am thankful that her health crisis and need to change her own health has brought me full circle on why I needed to change 2 years and why I need to continue on the path I set for myself then. Hopefully I can encourage Jen (and anyone else wanting to join the PITA heart health team) to better healthier choices and to sticking with them.

Until then PITA and change the life of a child with Autism, the life you change might be your own.

UPDATE: March 28, 2012

I pulled this blog up to quickly tell my story to someone who commented on my exercising and decided I should update it with the changes that have happened since I first posted it.

Ed has started exercising since Feb. 2012 and has lost an amazing 30 pounds. He is also walking an average of 4 miles a day.

I continue to walk daily and have been doing a strength and core video series to tone up, which I hope to blog about soon.

Happy Birthday Ashley Lynn Primer? or Happy Thanksgiving Grumpa?

Shannon Primer is not sure; this is a moral dilemma, but I need some objective opinions.

In past years when my sisters and I worked in the hospitality industry, our families worked Holiday meals around our work schedules. That being said, most years we were all off by at least 3 pm. Fast forward a few years, none of us work in that industry now, but the oldest grandchild of my parents now works retail and this year has to work 12 pm to 6 pm. (I should state this is my oldest child Ashley). For me, my first thought was “Let’s have thanksgiving dinner at 6:15 pm.” I heard arbitrary groans and moans from family members and think “Ok, fine. Let’s compromise and have dinner at 4 and dessert at 6:30 so Ashley does not feel left out.” My Dad then objects, and says he is eating at 1:00 or 1:30 pm even if he is eating alone (we should hold him to that. Maybe he’ll cook for himself too!). I guess he has always felt holiday dinners should be early, but at 39 years old, this is the first I have heard of it.

Ashley is a good daughter/granddaughter and does not want to cause waves. She said to have it whenever GRANDMA wants to have it, but I am personally annoyed. Not only is this Thanksgiving, but Ashley’s 21st birthday, and her birthday always falls around Thanksgiving and we generally celebrate her birthday with cheesecake on Thanksgiving, and here is my dad saying she should not have dinner with us and he will only eat at 1ish!

Part of me agrees with Ash, part of me thinks my Brother In-Law just got back from war and I should maybe comply because I am truly happy and THANKFUL he is home safe and sound. Most of me, on the other hand, wants to just say nicely to my sister and my mom that the Primer’s will be eating dinner 6:15 when all of the Primer’s can be here. Honestly, what is dinner without Ashley; what is Thanksgiving without celebrating Ashley’s birthday? We, the Primer’s, have done that for almost 21 years. I hope to continue that for 21 or more years…

At what point does one go against their own dad to do what they truly think is in the best interest of their almost 21 year old daughter’s holiday and birthday? I know Ash just wants peace and quiet and does not want “GRUMPA” or grandma upset; she also does not want me causing a family scene or her causing a family feud. But where in the world of being sibling, cousin, family member or any other related person, mean your day and your time is not important? Ashley is as important as my dad to us having a family dinner. How does one chose between their parent and their child???

For me, it’s Ashley’s 21st birthday Sunday, we always celeb rate with Cheesecake after Thanksgiving dinner and it can’t be Thanksgiving Dinner or dessert without Ashley. If it’s not Thanksgiving without Ash, then I should not celebrate without her?

Am I wrong to feel this way? Should I compromise further then saying dinner at 4 and dessert at 6:30? Should I not attend dinner at my sister’s even though I know I might offend her and her husband if I don’t? What is a girl to do? My dad already put me between him and my daughter. My daughter said chose him, but ever fiber in me says chose Ashley!!!

Please tell me what to do, here or on Facebook.

UPDATE Grumpa woke up this morning and was in a better mood, dinner is 6:15 pm. Got to love Grumpa when he is not Grumpy lol.

Communication Shut Down Day

Blog thoughts on https://communicationshutdown.org/

Things I wanted to say today November 1, 2010 on Facebook on Communication Shut Down Day, but could not because I vowed to be silent on Facebook, Twitter and MySpace.

6:30 am. Woke up, looked at phone and realized, Oh ShOOt (clean version) I can’t post on FB for the rest of the day. CRAP!!!!

7:00 am Pumpkin seeds taste best fresh out of the oven and HOT!!!

7:35 am Damn its cold, it is definitely fall.

8:20 am Crap, I can’t respond to a private message, even if it is IEP related because I took a vow to not post on FB. Do I have Kristen S's email address? Oh they should have made us shut down e-mail other than work related also. That would have made this more like Austin, and being able to observe, but not communicate.

9:00 am Damn!!! Shelly made it to work, that is impressive after drinking Dirty Shelly’s at Oktoberfest yesterday.

10:00 am realized I need to go back to the gym, STAT, I have muscles I am neglecting and riding the mechanical bull yesterday pointed them out this morning.

12:20 pm peaking at FB friend Kelli popped up in Private chat, cursed, and sent her a text message. Thought to self damn they should have made me vow to stay off FB, Twitter, and text that really would have killed me.

12:25 pm wondering if I should be annoyed that the https://communicationshutdown.org/ app posted to my page at like 7 am. Wasn’t I supposed to not post, and yet they did? I could see if they did at midnight, but 7 am? Just saying. Autism has no apps that can magically post for them.

4:38 pm Whose bright idea was it to drive to Escondido during traffic hour?

6:45 pm Thinks Emily Primer might be the smartest Primer yet, she said we should get a mechanical bull for Austin’s birthday next year, after I complained that the guy running the mechanical bull yesterday at Oktoberfest did not even challenge Austin. Damn that girl is smart, just saying!!!

7:30 pm read two Facebook friends responses on Facebook to Communication Shut Down day.

• Elizabeth M.: Not the 2nd yet, but here I am! I stayed off until about 4pm today. I am going to be perfectly honest here, while off of Facebook I did not even remotely feel silenced or socially alienated like people with Autism do. I was able to shop, talk on the phone and care for myself and children. However I am praying for hope and recovery for Autism. I hold hands with my fellow Parents whether in silence or not.
• Cindy W.: I'm actually getting a kick out of the people who said they wouldn't be on FB today who are actually lurking on FB.

My response here and not on facebook…

As a parent of the nonverbal child, I never took this day as a day I could not look or read on Social Media; I took as a day of silence. First and foremost because my child is silent does not mean he is not in his world or does not observe it. So if that means I cheated, so be it, but I made it 24 hours in support of him. If you read from their page, I took their response to mean the same thing. First and foremost, their “aim is to simply encourage a greater understanding from people outside the autism community. Social network users have become reliant and even addicted to platforms like Facebook and Twitter. And if they shut down for 1 day, they will feel a sense of disconnection and a sense of frustration.”

I am inside our community and I still took the vow.

From their site also, “When you get the CHAPP, you are making a donation and helping to raise funds and awareness for autism. If you decide to cheat a little on the day and log on to your account, that's entirely up to you”

Also from their page, “We are talking to a number of people on the spectrum and parents of children with autism who will be blogging on Nov 1 about their positive experiences and also their challenges”

I personally took Social Media to also mean no blogging, so you all will see this tomorrow, because I am also not blogging today, even though I have a lot to say.

8:00 pm Shannon Primer has to love a man who will vacuum and straighten up, upstairs when he knows his wife will deal with the social worker tomorrow alone, since he has football practice and for some reason they both never planned ahead when having a kid with Autism and made him have a birthday not during football season. Thanks Ed Primer for helping out yet again! I know I bitch and complain, but I do appreciate you!!

8:15 loves that her 18 year old is checking his General Election Guide for his first time voting tomorrow. Yeah Nick, you Rock!!! He also said he wants Ed and I to wait to vote with him. Family tradition here. So if you ask before 8 pm if I voted the answer will be no, I vote when Ed gets home after football practice and when Ash and Nick roll through the door. Screw all of you who vote by mail, the Primer’s vote in groups!!! Love VOTING DAY!!!

8:33 pm Damn another friend without a child with Autism just popped up on FB in private chat, and he is not answering my text, oh well he will forgive me. Won’t you Eddie?

8:46 pm cursing Eddie S. for not checking his DAMN iPhone! And still thinking next year they should make this day not the day before election day and for lots of communication venues like blogging, Facebook, Twitter, MySpace, texting, e-mail, etc. I am just annoyed and not really challenged like Austin.

8:49 pm Ok maybe I am really annoyed now by not being able to post on FB. My cousin’s cousin’s wife just posted on a picture of Amy’s Rice Macaroni & Cheese with Non Dairy Cheeze picture that I posted, saying that my Henry’s market is now carrying it after I asked for 6 straight weeks and had to threaten a blog. Ok it was worth the protest; they also started carrying Daiya Cheese, and Udi’s bread. Damn I forgot to mention Amy’s new GF Chocolate cake, note to self to ask for that tomorrow. Oh wait my complaint was I wanted to respond to Naomi G on how to get it at her Health Food Store.

8:51 Eddie finally noticed I texted.

8:55 Friend Kelli S. pops up to point out I am cheating by having Facebook open, told her via text I was blogging about the subject as we typed lol.

9:25 Wonders if I went to bed before 9:25 PST yesterday and it is now 9:29 PST if I can post a new blog? Ok , I am going with no since then I will want to post it to Facebook and I am sure that is against my vow. Damn ethics. WTH is up with those?

9:32 Autism Warrior friend Laureen F. Pops up to comment I vowed to be off, sent her back via text I vowed to not communicate. Waiting for her response;-)

9:34 Noticed Trudy S. posted on Facebook and cursed her for being in Ohio, I am sure she will understand.

9:50 pm bummed Ash called to say she has class and that she will have to vote by herself!!! We will miss her.

9:53 pm Loves Jackie S.’s FB post that says, “I wasn't off fb today to be silent about autism. I was off fb to show support for children and adults with autism, to raise money for GOOD organizations, and to at least attempt to get a glimpse into what it feels like to not talk and/or communicate, even with those I care most about (cuz lets face it...even those who are verbal have a hard time communicating).”

10:00 pm I broke and responded to a FB post even if was only privately. GRRRRRR, sorry, I can’t not respond to a family in need. Austin will understand, I hope.

10:05 pm wonders what a “Hot Luncheon Sundae” is? Farrell’s Ice Cream Parlor is offering one free if you come in with a “I voted sticker”. I like free!! I like Farrell’s and really really want to visit the one in Mission Veijo. Do you think they offer anything GFCF for Austin, or do I need to run away from home?

10:09 pm giggles at Amy M’s post that good friends help you clean your garage and thinks great friends “watch Christopher”!

10:25 pm I think I am ready for bed, but am really really trying to make it to midnight to post this blog, I am wondering if I can make it???

10:28 pm Loves her friend Lisa R.’s post “Hubby and I spent 1/2 our date researching the props for tomorrow's vote. I think we are voting the same way on all but 2 items - when we first got married we canceled each other out 100% on every item... time and proximity can change a lot it seems!”

I think Ed and I are only voting differently on one, but I failed to ask him how he is voting on Prop 19 and I am unsure myself how I am voting, so it may be 2.

10:36 pm I am glad I broke my vow of silence and responded to a PM that needed help. I know that Austin will understand that kids like him need help even if we vow to be silent.

10:38 pm Random thought, I love that Sunny Garcia has not unfriended me and all my politically unfriendly Autism thoughts, and that he really is in it for the kids, thanks to Surfer’s Healing!! I <3 Sunny!!!

10:43pm trying to make it until 11, then I can at least lie to myself and pretend I made it 23 hours.

10:53 pm Knows it is time to go to bed when she hates the friends from high school that have the means and ability to go to the World Series. I am not jealous, I am not jealous, if I keep chanting this will be true, especially since how would you all know I spent every summer in San Jose with the most awesome SF Giants fans ever and that I am a huge fan and you should have taken me the parent of a kid with Autism? Even if you met W. and I am anti, lol. Just saying!!

11:31 PM Loves that Nick Primer just came down to discuss with me why I am voting for every state or City Prop and why after he already asked his dad and we know that there is at least one, Ed I might have different opinions on some issues!

So until next time PITAup, change the life of a child with Autism, the life you change, just might just be your own!!!

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