Power of the People OR An Amazing Day to Watch our Legislative Process at Work

There have been several big decisions in our legislative system this last few weeks. Some I worry about and some I am very very happy for and proud of. 

Today I want to share with you my experience last night.

I grew up in a small town in Wyoming. It was a very conservative atmosphere. My father did work in the county politics and helped at a local level on big campaigns too. When President Bush the 1st came to town, my dad helped with the preparations, with greeting him, with driving the small motorcade. 

From a young age I felt differently than “most” of the people in my circle of relationships. When I was 5 I urged my dad to vote for Carter instead of Reagan. I was teased by my grandpa and uncles for “being a tree hugger” in high school. I seemed to be one of the only people in the room who was offended by racial or sexist jokes. A few young ladies and I formed a “feminist group” in high school and were politely told to sit down and shut up.

After I left home I learned more, broadened my horizons, decided how I felt about different subjects. But politics – it had always turned me off. It honestly made me frustrated and angry. I felt that no matter what “we the people” did, nothing would change the way the government wanted to do things. I felt like the people didn’t really have a say and didn’t really have a chance to change things much. I felt like my vote didn’t count – especially after the whole Florida Bush (the second) and Gore problem. 

In the past 8 years or so I have come back to those political roots I was given. I have started being outspoken about my beliefs and I have started supporting various causes I believe in. With the introduction of social media into my life, I also feel like I received validation. I found out that there are a lot of people who believe like I do. That I am NOT an anomaly. I found a group of people which I could relate to and learn from. 

Last night, though. LAST NIGHT, y’all. Last night changed the way I will look at politics forever more. 

First of all, I watched the proceedings streaming live on the internet. WOW. Second, I realized the best place to get real information is Twitter. I know, weird, right? The news outlets certainly weren’t covering it. 

In the Texas state legislature a bill was brought forward restricting a woman’s right to choose her own healthcare, and which would effectively shut down almost all of the clinics in which women can gain access to abortions. 

THIS WOMAN 

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promised to filibuster this bill. Wendy Davis started her filibuster yesterday morning a little after 11 am. The deadline for the vote on this bill was midnight. The rules: no sitting, no leaning, no touching a desk or chair or railing to get support to stand. No eating, no drinking, no using the restroom. No help of any kind whatsoever. She had to talk that entire time, without stopping. She had to stay on topic and not keep repeating herself. She even tried to put on a back brace and they VOTED THAT SHE COULDN’T! When the president announced that decision, the gallery erupted in screams and boos.

And Senator Davis kept going. 

The gallery was packed. JUST packed. The President of the Senate reminded them several  times that disrupting a senate session could get you thrown in jail for 48 hours. When one supporter of SB5 shouted that abortion is genocide, he was removed. When one young supporter of Wendy Davis and a woman’s right to choose stood and yelled that the decision on the back brace was “bullshit” and flipped off the president, she was removed.  

At one point there had been three challenges to Ms Davis’s filibuster. Two were on the subject of germainess (that she wasn’t staying on track) because she talked about RU487 (morning after pill) and sonograms. The other challenge was for aid from her back brace. There are all kinds of rules about every part of a legislative process. Crazy complicated rules. Someone called to end the filibuster and table the motion because of the 3 challenges. The president was trying his best to get that vote in. There were two senators who stood to challenge the decisions. They all had out Robert’s Rules and Someone’s rules of legislation, and the bylaws of the Texas State Senate and everyone was trying to figure out what the real situation was. The president seemed to just be striking everyone down and not following his OWN rules. Senator Watson and Senator Van de Putte (who by the way was at her father’s funeral all day and STILL came to work on this very important bill) tried their best. I thought they did amazingly. The president seemed to keep swatting them away. The gallery grew restless and booed the president – upset with his decisions. The president would not answer Senator Van de Putte’s question as to why her movement was ignored when it was clearly heard. He again dismissed her coldly. 

And THEN.

Then Senator Leticia Van de Putte asked the president “At what point must a female senator raise her hand or her voice to be recognized over her male colleagues?”

And the crowd went INSANE. 

With 15 minutes left and the president and the GOP senators pushing hard for the final vote. With Ms Davis still standing, still not going to the restroom, still not drinking, still not yielding the floor. With the need to hurry this along or wait until later….

The crowd went INSANE. 

I literally have chills and am tearing up remembering it. 

The crowd did not stop. They screamed and screamed they stomped. The president could not be heard with the microphone. The secretary could not be heard to call roll call on the vote. The Senators could not hear what they were even voting on and later many admitted they didn’t know if they were voting on the bill or on the previous challenge to the filibuster. 

And yet, the crowd DID NOT STOP.

The senators fighting to stop this bill were waving fingers at the gallery. They were talking pictures for the love of man.

And yet, the crowd DID NOT STOP.

The officers started escorting people out and those people put up a fight. They handcuffed little old ladies. They drug and pushed people out. 

And still they DID NOT STOP.

The president said if they could have order, Ms Davis would be allowed to continue and no vote would be taken until that was done.

The crowd could not hear him. The crowd DID NOT STOP.

They screamed and screamed until 3 minutes after the midnight deadline. 

The president gathered the senators around him and tried for a vote. But he could not be heard and the time stamp on the vote was at 12:02. 

The vote did not count and the bill did not pass. 

When the pictures of the crowd in the capitol and outside of it came through I was in tears. So many people fighting for their rights. So many amazing people there. And they STOPPED THE VOTE.

I am happy this bill did not pass.

I am so much more amazed to see that our political system really can work, and that the people really can have a say. That we really do have power to change things. If that crowd had not been there last night, the president would have simply mowed over all of the arguments and called for a vote. And the bill would have passed based on the vote that didn’t actually count. If those people hadn’t said “spending 2 days in jail is worth my individual rights” and stayed there and screamed and stopped the bill, it would have passed even though there were obviously a lot of people who didn’t support it. 

I have never seen anything like this.

I was so pumped last night I couldn’t sleep. I was so amazed by this spectacle. 

If you didn’t have a chance to watch it, google SB5 and try to watch the last 40 minutes. Or at least the last 20. It was so amazing to see people making a difference in their own lives. Taking responsibility out of the hands of the privileged and making it their own. 

Now, now I have a new direction in my political views. I will always remember that I DO have the power to make a difference, and I will get out there and help make it happen. 

 

 

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A No Pain Vacation

I have written about my chronic pain a few times. I have migraines that at one time were basically constant. They would get so bad I was ending up in the ER several times a month. I have muscle and bone pain from damage caused by two of my cancer surgeries. I get kidney stones. Sometimes thyroid patients just hurt – if their TSH is not where it should be, if they have calcium or vitamin D issues. I go through that periodically. I also have low magnesium, that was part of the problem with my migraines and it can also cause problems with muscle and joint pain. 

I started seeing a pain intervention doctor. He has changed my life. He has gotten my migraines almost completely under control. He has gotten my chest and neck pain at least 80% better. My magnesium and D and calcium and TSH are all well regulated right now and I haven’t had any bad kidney stones in a while.

It used to be that traveling would trigger migraines. Driving or sitting for long periods would irritate my neck. Driving and doing anything with my arms (carrying things, having a backpack on, helping my son, shopping with a cart, vacuuming) would irritate my chest. Basically traveling had become difficult because not only was I in pain, but I couldn’t enjoy the time with family and friends like I wanted to. I had to spend more money because I had to stop at hotels more often – I could drive maybe 4 hours before I became exhausted and in too much pain to go on.

I told my pain doctor thank you the other day. 

Our Florida trip was the first vacation in over 6 years that I have been able to really enjoy. I truly didn’t have any pain issues on this trip except one migraine that was controlled in a few hours with my medicines. It wasn’t so bad I needed the ER or even had to go lie down. 

Let me repeat that.

This is the first vacation with my son and husband I have EVER truly enjoyed.

It was amazing.

I almost started crying when I told my doctor this. I think he was a little overcome too.

My neurologist has helped tweak a few things to keep from getting the few breakthrough migraines I get. Changed the dose of my magnesium and the kind I take, changed how I take my medicine the week of my botox shots and the week I have my period. Added some small things like muscle relaxers. Told me to quit caffeine.

I also told her the exciting news when I saw her this week. She is working with my pain doc.

Please, If you have chronic pain, please don’t give up. Keep asking for help until you find it. I literally went through five and a half years of constant pain and a whole folder full of doctors before I found people who could help. I had decided no one could help me. I had decided doctors were too frustrating to deal with. I just needed to find the right doctors. I had gone to 2 other neurologists that didn’t help, physical therapy that helped a little, 3 chest surgeons. Heck, I even begged and pleaded and enlisted my neck surgeon to have a thoracic surgeon try to fix my chest the last surgery I had. I had tried so many meds and so many changes to my life. I was still suffering to the point that my life was not fulfilling. 

Having major chronic pain changes a person. Being mostly pain free or at least diminished, I feel much more like my old self now. 

I still get fatigued, but that I can work with. 

I am just so happy that I have gotten to this point, and it gives me hope for my future. I had resigned myself to the fact that I wouldn’t ever be like I used to be. I’m not the same person I was over 6 years when this journey began, but I am now able to enjoy life and family and having fun much more. 

 

Florida Trip par 2. Pensacola Beach

The second part of our amazing Florida Trip was equally as amazing as the first. I spoke about that here:

https://fishjello.wordpress.com/2013/06/17/florida-trip-part-1-disney-world/

On our fifth day of vacation we all piled into 2 giant vans and drove to Pensacola Beach. It took us about 7 hours. The vans were way way nicer and more comfortable than I thought they would be. We had tons of room for both our luggage and our people. I got to sit in the back with my hubby visiting – which I NEVER get to do on a trip. I didn’t do any of the driving and somehow I felt a lot better than I usually do on a car trip. Maybe because I was able to relax and move around more. In one car we had Brother #3’s family and my dad. In the other we had Brother #1’s family and my family. The kids all wanted to ride together, but I thought that would just be way too much kid noise. We had talked about switching and being with my nieces part of the time, but between naps and such we just never did. That’s ok, we were able to really play with them at the beach house.

My sister in law bought some little perry the platypus toys for her boys literally on our way out and I bought a similar one for mine right before we left and they were the best investment ever (after the trampoline and the rocky chair). That entertained those boys for like 3 hours. They were even quiet because their perry’s were nesting some eggs. LOL (yeah, we talked about boy and girl differences briefly but it didn’t persuade them.)

So, we set off to Pensacola Beach. The drive DID have a huge amount of rain as a tropical storm was coming through. Also a lot of restroom breaks, mostly mine (sorry, I have a bladder problem, ok!) but we made it and the drive wasn’t bad at all.

The beach house was terrific. There were three separate bedrooms, a loft area with a full sized bunk bed and a queen sized pull out and a “master” with 2 queen beds in it. (yeah, we thought that was weird too, but it worked out.) Naturally we put the kids in the loft. My son loves sleeping with someone and he slept with his next younger boy cousin 2 nights, then with us in a king. The first night he snuggled right up behind my cousin with his arm across him and they fell asleep like that.  But after that the two of them had a cough and I think they were waking each other up. AND there were 3 full bathrooms.

Dad immediately claimed the cute downstairs all alone with a private bath bedroom, which was perfect because he didn’t have to hear the kiddos all the time if he didn’t want to.

My sis in law who wanted to be near her coughy son offered to take one bed in the two bed room and I said I didn’t care where I was, but I DO have a very bad snoring problem and am supposed to use a cpap but can’t, so fair warning. The other sis in law decided to stay up there in the 2 bed room too because she has a little one she didn’t want to be clear downstairs from (the 2 year old niece.) Also, probably because those two couples have spent the most time together and maybe know each other’s habits more? Then brother #2 and his fiance came and they got the last private room. Which, honestly, is fair cause they don’t have kids to wrangle and the rest of us do, so giving them a door to shut is probably the best thing.

The house was right on the Intercostal Waterway and had a small dock out the back door. It had a terrific raised porch – very comfortable and overlooking the intercostal waterway. It was simply lovely at night. It had plenty of comfortable seating and a couple tables and a BBQ. We could see the stars and some lights across the waterway, and the water. We could hear the water. We could watch the sun set. It was so nice. The weather was great. It was a little stormy a couple days, but mostly that just cooled things off.

In the back “yard” they had the dock, and a cement platform with a table and chairs and a picnic table. Between the cement platform and the dock was beautiful beach sand. 2 large areas of beach sand instead of grass. Perfect for 6 kids to play in. Aunt #1 brought buckets and shovels and we let the kids go down there as much as they want and dig, build sand castles, bury each other up to their necks, make moats, draw with sticks and more. They even found shells in there. The two year old was hilarious. She seemed to think she needed to pour all the sand into the water off the dock two handfuls at a time. We could see the kids from either “porch” and they stayed away from the water when we weren’t on constant watch. They loved it.

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We were a 5 minute walk to the beach. Like, the real beach on the Gulf of Mexico. It was lovely. We headed over after just a few minutes at the house and a little dinner. It was a red flag day, so we were not really supposed to swim. In fact the lifeguard said to only get in to our ankles at most. The rip tide was NOT screwing around. At all. My husband and the 13 year old boy and some of the other men went out way farther than I thought they should, like to their waist. But not for long and they seemed safe about it. I am not a strong swimmer and have always been wary of the water – especially big bodies of water – even lakes. My husband (who grew up on the Black Sea) and my sis in laws and my dad (swim team) are all way more confident than I am thank goodness. My son loved the ocean. It was his first time at an actual ocean. We had to really hold on to the kiddos though with that rip tide and mostly they just waded while holding onto one of us. It was an amazing feeling – all the sand would just be pulled out from under you as the tide went out and you would sink right into the sand. I can see how someone could so easily be pulled out to sea and never been found. The next couple days were much better and the kids were able to actually enjoy the water. They put on floaties and went way out into the water with parents and actually played in the waves.

We went to the beach 2 times a day for the whole stay. We looked for sea shells and my sis in laws found some great ones after the storm. All of the kids were just in love with the ocean. Swimming is something that really fatigues me since I was sick, and I can only do a little of it, so I really only swam twice. But my husband and the two sister in laws who love the water went as much as possible. My uncle (mom’s brother) brought his little sail boat over to our dock and took all the families out on it (except those of us who get motion sick and stayed home and rested – which was a nice treat anyway). All the kids especially loved that. He gave them all a chance to steer and luckily he wasn’t killed by us land lubbers.

We had a kitchen in which we fixed breakfasts, lunches and snacks. For dinner we went out every night. Most people wanted to eat sea food since they were at the ocean and we found some nice places. I personally liked Peg Leg Pete’s the best. They had a sand pit and playground for the kids, so we could sit and talk a bit and their meals came in a plastic sand bucket. Then just as our food came a band struck up some live music that I have to admit I liked.

It was really nice to see my uncle and his lady friend. We also were able to see his daughter and her husband one night, but it was the night we went to scatter ashes so I felt badly I wasn’t able to talk to her much. I remember her from her visit to Wyoming when we were young and our visit to Florida a few years later. I would have liked to have caught up more.

For my son the best part of the trip was playing with his cousins. He loved playing with his “new cousin” the teenager we have brought into the family. Poor teenager felt a little beat up on by me because he can do things the little kids can’t do safely and I had to keep telling everyone to stop. For example, they started a pillow fight and my son (lacking a pillow) decided to use his perry the platypus and hit his little girl cousin in her face with it. I put a stop to pillow fights so no one got hurt. If the teenager had had another older kid it might have been a little more fun. But my son loved playing with him, playing with his best friends, brother #1’s kids, and playing with the girls, brother #3’s kids. He really enjoyed the 2 year old niece. I caught him several times snuggling with her, playing with her hair and just playing nicely with her. He said he likes younger kids.

The best part of the trip was sitting and talking and goofing around with each other. Laughing and enjoying our time together. We did a few crafts/activities for the kids and that was fun too. I had found some pirate face tatoos at Target and took them with us. I am not kidding when I tell you all but the oldest and youngest had pirate beard, mustache, scar, tatoo, and scarf on their faces for two days. Even the 5 year old girl. It was awesome.

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If you ever want a nice, quiet experience at a lovely place, go to Pensacola Beach. The only times it was busy was on Saturday night, when it looked like the young crowd came out to party. But the beach we went to – we hardly saw a person there. It was so empty and lovely and nice to spend time together. It wasn’t the crowded crazy beaches you picture at all.

The hospitality business there was terrific, we were able to go to the National Aeronautic Museum there (though I wish we hadn’t taken the kids so we could have enjoyed it) and we had a lovely and relaxing time. I think it’s the first time none of us were doing business half the time, or playing video games. I even put away my facebook.

I am so glad we were able to enjoy this time together and to have fun as a family.

Florida trip part 1: Disney World

So, my family was given an amazing opportunity to go on an amazing trip.

Before my Mom died she gave instructions to cremate her, then wait until everyone could more easily go (and enjoy ourselves), then have a family trip to scatter her ashes on the sea shore. She wanted us to all go together and have a wonderful time. She cashed out some retirement accounts and put the money aside and gave my dad all the instructions. Her only details were it had to be at the seashore and we had to go have a lovely big family vacation. My dad decided to return her to her native Florida and to take the kids to Disney World. I am glad we waited a while – it was nice not to have that fresh grief hanging over us and to enjoy our time.

Now, we have tried to get together every summer the last few years for a vacation, and we have tried to do Christmas for most of the years until the last 2. However, none of us can afford a big elaborate vacation, so it is usually something like a camp out or a big cabin where we all share a big room with bunk beds. Those have been really fun, and the goal has been spending time together, which is the important part. You can imagine this trip was quite different and truly a memory maker.

I tried to start with the “important” part of the trip, but it just isn’t happening, so I am going to just go in chronological order.

The first part was Disney World for the kids (and the grown up kids.)

We arrived in Orlando in the evening, so we really didn’t use the first day of tickets much, and part of our party was delayed by over 4 hours due to mechanical problems on their plane, so they just got to swim in the hotel pool “in the dark of night” as my nephew said. They seemed to think it was magical anyway. My dad was worried about us not getting our money’s worth because the flights got in so late that day. It’s ok, after the days we spent there I was exhausted and so was everyone else, so I think it worked out just right.

My family and my Dad arrived first. After we got checked in at the https://disneyworld.disney.go.com/resorts/port-orleans-resort-riverside/ we had dinner and then my family went to Downtown Disney https://disneyworld.disney.go.com/destinations/downtown-disney/ by boat. They have an arcade my son wanted to go to and we thought that night was a good time to get it out of the way. That way he was able to get some of the excitement out of the way and sleep and we weren’t wasting our entire first day. We had a good time that night, looking at things, riding the boat, riding the bus back, playing at the arcade. If you get the chance to go, I highly recommend this area for adult type entertainment. They have tons of bars, clubs, music, dancing and restaurants. Also, who knew that Disney is so big with the gay crowd? Not me. 

Our rooms were lovely. I highly recommend this resort in the park. If I could go with my family again, I would spend a few extra days just to enjoy the resort. They had terrific pools, fishing, bikes to rent, horse and buggy rides and more. It could honestly be a vacation in and of itself. We had a meal plan and in our hotel there was a “cafeteria” area that was delicious. We ate there at least once a day, but there were also several other restaurants as well as at least one bar. The theme of the resort was “the bayou” – like in Princess and the Frog. The decorations were terrific, the pool right outside our front door was terrific, the atmosphere in general – terrific. No major noise, extremely clean, just lovely. Disney puts the same amount of details into everything – our carpet looked like wood flooring and there was a secret pull out trundle bed hidden in the wall – with a crocodile and the frogs painted in the wall over it. We weren’t very close in relation to each other except brother #1 and my family. (brothers are listed in age order, not by how much I like them or anything. #1=born first, #3=born third… brother #2 and his fiance (partner woman) didn’t get to join us until the beach house.) My dad was off in another area and the brother #3’s family was quite a ways away, but they got to stay in “the mansion…” We had thought the agent told them to put us together, but this worked out just fine, no big deal to stay separately for us.

Since we had the meal plan, we got 2 meals and a snack every day. I decided to have groceries delivered to our hotel for everyone to keep in their room. Most of us decided to do breakfast in the room to avoid the breakfast rush and to avoid having to deal with children in a restaurant that early. It was a great decision for our family at least. I highly recommend this if you go, especially if you have any picky eaters. The delivery fee was totally worth the convenience, and since we had 4 families, we split it up. (https://www.orlandogroceryexpress.com/)

We had all kind of decided the parks we wanted to hit on certain days and the things we really wanted to see the most, but being on a family vacation really highlights the differences in families. I thought it was funny to see how everyone did things differently. Brother #1’s wife knows that their boys are only good for a certain amount of time. She had it down to 3 or 4 things they truly wanted to see. They hit that park, saw those things, and went back to the hotel for a rest or swim, then they did it again later. I personally knew that my son can go most of the day, but he doesn’t like to be rushed from thing to thing. We kind of like to go to an area of the park and see what looks interesting, which I was really glad we did in Tomorrow Land. I think we had the best time there. I wish I had done that more at the Magic Kingdom because that day was our best day. Brother #3’s family had certain shows or performances they wanted to see (they are all artsy and musicy and stuff) and they planned the rest of the activities around those things. They have a different dynamic in their family than the rest of us. There are two fairly energetic and young acting parents – one who is very pregnant, there is a teenager who has been “adopted” into the family, and there are two young girls, one 5 and one 2. So they had a large range of “wanted” activities. They split up some, the teenage boy and the dad going on big rides and the mom and girls going to things like Nemo and Dumbo. All of our methods seemed to work for our individual families. Brother #3 wanted to really go to every place – so they spent a couple hours at a water park, then went for a few hours to Animal Kingdom, etc. They also stayed out until the parks closed …. I didn’t want to spend our whole day on buses and ferrys and monorails and walking from park to park, so I picked the things I thought would appeal to us most. I also have to be careful of my energy usage or I fatigue quickly. I decided not spending my energy on walking from area to area in the heat would serve us better. We did stay out longer than I would have imagined us doing. My husband and I didn’t get to see all we would have liked to – but really, you can’t. We decided if we really wanted to see as much as possible, a 10 day stay would be necessary. There is just so much to see and with lines and such you end up not doing it all. Plus we had a night that got rained out and all the rides closed, so that was disappointing. But we saw our major wants, saw light parades and fireworks and the castle transformation, and had a great time. My goal was everyone having a great time and spending time together. We accomplished that.

The funniest part was Brother #1 told me that they had changed their plans to go to Hollywood Studios first instead of the Magic Kingdom because star wars was there for a last day. I normally get all anxious if I have to change plans, but I thought – hey, we are here once, why not? I am glad we went with them – we saw things we would have missed otherwise, were able to find out when and where to sign up for Jedi Training for the boys the next morning, and it was nice for my son to see his cousins most of that day because after that we were able to split up and go do our own thing without the kids feeling like they didn’t see each other. We didn’t really see my nieces until the beach house but a minute or two and I think both groups would have liked to see each other more, but it simply wouldn’t have worked out trying to follow all the families around every day. We did watch the light parade with them and that was fun.

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I have to tell you a funny story. We got up early and hit Hollywood before it opened on our second full day to try to sign the boys up for Jedi Training. We wanted to do it as early as possible so we could get on with the rest of our day at another part of the park. We were in line when the gates opened and not too far back either. As the people started surging forward we were worried all of these people were there for Jedi Training. My sister in law picked up her little guy who wasn’t feeling well, grabbed her older one by the hand and practically ran to the place we were supposed to go. My son wasn’t feeling that well either, so my brother picked him up and put him on his shoulders and we walked fast (though not as fast as sis). At almost the last minute the crowd surged the other way away from us, to our relief and when we got to Jedi Training we were just behind a few people in line (thanks to sis running her little hiney off). Her competitive side does come in handy. Jedi Training was totally cool, BTW. And making your own light saber – also totally cool.

The last day my husband and son decided to do it differently than I had planned as well. They wanted to hit the big exciting rides as much as possible, so we ended up fast passing and snaking back and forth across the parks to do that. My dad joined them on a few rides and the boys had a blast. 

In all it was magical, tiring, fun and the trip of a lifetime.

A few thoughts: first – fast passes -they don’t cost extra like some of us thought. Do them. Second- check into any extra fun stuff happening before you go. We were able to see star wars parades, many Star Wars characters walking around, and do jedi training all because my brother looked and saw what was available. You never know what you might find, they seem to have special stuff going on all the time. Holidays are very special in the Magic Kingdom. Third – if you haven’t gone before, check out the “disney parks” movies that tell you some fun stuff to try and even some behind the scenes hints. There are a few on Netflix. My son and I saw several things we wanted to try that I never saw advertised or even highlighted on the website which were some of our favorites. Fourth – take your own ponchos and glow sticks. It will probably rain, and theirs are ridiculously expensive and all the kids want glow sticks for the parade of lights and fireworks. Fifth – when the fireworks and parade are going on is a terrific time to ride rides – no lines, so I suggest seeing that stuff the first day and hitting the rides every night after that. Sixth: we did a character lunch and it was totally worth making a reservation a long time in advance and paying extra. You do have to make reservations like up to 3 months in advance, but it is so much better than standing in line to see characters for 2 minutes. The characters came to our table, we got pictures with many of them, and they even did some fun dances and such with the kids. It was a terrific meal experience for my son who is afraid of food, so it was so worth it for me. Sixth – balloons are expensive. Seventh – just have fun. Let having fun be your goal. Don’t think about what you are missing, don’t think about what you didn’t see, just think about the great time you had. My son only missed out on one thing he wanted to do and he didn’t mention it to me until the last day. I feel kind of bad about it, but I guess it gives us something to look forward to if we can ever go again.

A spoonful of sugar part 2. A happy ending.

So, a couple days ago I was kind of falling apart. Feeling isolated and alone and frustrated in general. I got some support on Facebook after writing about it. Here is the post about my son’s medicine kerflufle: https://fishjello.wordpress.com/2013/06/15/a-spoon-full-of-sugar-doesnt-do-crap/

This week I am feeling much better about it and about how I handled it.

First I sat down and wrote my son’s doctor a letter expressing my concerns and giving her the name and numbers of our therapists in case she is interested in educating her staff more. I pointed out many things about this whole “force your child to take medicine” thing that made me upset and uncomfortable. I told her I really love her and her staff and really trust them, but that we feel this was dealt with very inappropriately and why.

Second, I talked to my son. I told him that I was not going to force him to take the medicine, but that if he gets more sick we may have to get a shot or something like that. He understood and had already told me that he thought a shot would be less scary than facing the medicine twice a day for 10 days. He even thought the hospital would be less scary.

I talked to him about personal boundaries and about how our bodies are only ours and no one else’s and that I was proud of him for telling me what was scary and uncomfortable for his body. I told him that anytime something feels scary or uncomfortable within his personal boundaries that he should talk to me or his dad about it. I did tell him that sometimes in life we have to do difficult things – like trying new foods – but that mom would never MAKE him do anything that really scared him, and that I respect his personal needs and space. (I don’t know what we will say if it ever comes down to a surgery or something that has to be done but is terrifying, but we will cross that bridge when we get to it.)

It was very interesting because after this discussion we decided to try to get out a little bit yesterday and were at a place with other kids we didn’t know. He started playing with some girls, but he was playing in a way they didn’t like. He was chasing them, even though they asked him not to and after I talked to him about not chasing once he even started pulling on them or trying to pin them down. I stopped him and made him stop playing until he could control himself. I had him apologize to the girls for not listening to them and respecting when they asked him to stop, and I made him leave them alone so they weren’t more uncomfortable. He had to go play in a different area of the play place because he had made them feel unsafe. He understood why and he felt badly about making someone feel unsafe. He was able to get back under control and we talked about it after we left again. I told him even if he gets over excited it isn’t ok to touch other people or play with other people in a way that feels bad to them. I explained to him that just like his body tells him when he is scared or uncomfortable, so do other people’s bodies. I talked to him quite a bit about how when someone asks him to stop or tells him no or even seems uncomfortable (but maybe can’t say stop), he needs to stop doing whatever it is that makes them feel bad. And if they are really upset, he needs to get a grownup to help and to leave them alone. I talked to him about him feeling scared of grownups making him eat or take medicine and I talked to him about how other kids get scared when they have to do something they don’t want to and we don’t want to be the one to scare them.

I came home and modified that letter to the doctor. I mentioned this incident briefly – I pointed out that if parents are forcing their children to do things that are extremely painful or uncomfortable, how do we teach them respect of other’s boundaries? How do we teach them to defend their own boundaries? If my son encounters an adult who does something that makes him uncomfortable, but has been told over and over he just has to do what grownups (even doctors or nurses or parents) say, then how will he stick up for himself and how will he trust me to realize how scary this was when he comes to tell me what happened? If he doesn’t trust me to respect his boundaries how will he trust me to defend them? If he doesn’t know that his boundaries are to be respected and honored, how will he respect and honor other’s boundaries?

I am glad I made the decisions I did. I am glad I had a talk with my son and even more glad that we had an opportunity to reinforce the idea. I am proud of him for sticking up for his personal space and I am glad he trusts me enough to tell me he is afraid.

I feel more empowered now, and I feel like maybe I can help others out there with similar problems. I haven’t figured out how yet, but I am going to work on it.

Thank you all that gave me support. It takes a village. I am glad I have a good one.

A spoon full of sugar… doesn’t do crap.

A lot of people look at me weird when I tell them my son has some “issues”. He looks “normal”, he seems pretty “normal”. They tend to think that disabilities or problems or issues should look a certain way.

That isn’t always the case.

I am very frustrated today and have been for the last few days because of one of our special needs.

My son has eating problems. (that is one of his “issues”) No one understands this. At least very very few. I have a few friends who’s kids are similar – but they are not friends who live here, I have talked a bit to them on facebook about it, and they don’t talk about it publicly all that much. The moms I have met in group feeding therapy are mostly there because their kids are diagnosed with failure to thrive or don’t chew or swallow properly. I have only met one mom who’s son just refused the majority of foods because of texture, smell, appearance or taste, and that boy had autism.

My son has sensory processing disorder. He also has a very rigid view of the world. He also has geographical tongue which affects the taste of foods – different foods taste differently at different times because of this. These three things combined have made eating very painful for him. I mean emotionally and mentally painful. He is literally afraid of eating new foods. He is terrified of vomiting or gagging (which has happened several times with new foods or drinks). He is so afraid of food that feeding him had become difficult to the point that I couldn’t live with it anymore. I fed him what he wanted and I gave up trying to get him to eat what I thought he should eat. Then he got a little older and I knew we needed to work on it for school and for nutrition. He wasn’t getting certain nutrients he needed.

I have detailed some of our adventures in feeding therapy in past posts. It hasn’t been an easy road, but we have made progress slowly.

It is very isolating to have a child with an issue that most people just don’t understand. My family, for the most part, thinks I should either just make him eat what I make, or that I should just deny him other foods until he will eat the food I want him to eat. This doesn’t work with him. My in laws say I should have held him down and force fed him as a baby and toddler and now he would be normal. My mother in law tells me this at least twice a month. It doesn’t matter how many times she sees him gag at the smell of food or freak out at foods, she keeps telling me I basically failed when he was younger. Never mind that this didn’t start right away when we started table foods, that this was a progressive self limiting of the diet over time. It doesn’t matter that when I tell her that most of our culture thinks force feeding is abusive….. It doesn’t matter that she force fed her son, yet she admits he was a very picky eater too. Friends and acquaintances look down their noses at me when I get my son only french fries and juice at a meal out. They think if I just got him the nuggets or hamburger or taco salad or mac and cheese or whatever he would eat it.

It really hit home one day recently when my son had a homework page that asked him to tell what his favorite food was and describe why it was his favorite food. He got anxious and said “I don’t like food.” We had to talk for a good 15 minutes about how he does like some food. That pizza and ice cream and cheese and Hershey’s bars are food and he can choose one of those. It was like a light-bulb came on. He didn’t realize he liked any foods. Food has been his nemesis for so long that he hadn’t thought about what foods he does like.

Well, this week it all came down on us and this experience has left me exhausted and feeling more isolated.

My son was really sick. He had been sick for over 10 days and started complaining that his back was hurting from coughing so I decided it might have turned into infection and we needed to see his doctor. We went in and she said he had a sinus infection, possibly a throat infection too, and prescribed antibiotics.

We got the antibiotics and went home. We tried to take a dose of the medicine and it was a huge problem. This is the first time we have had this problem. He never loved medicine but he would take it. He takes the meds he has taken for a long time. He did have a very nasty acid reflux medicine in the fall or winter that made him vomit, but I didn’t make him take more of it after the first dose – I had tasted it and decided I couldn’t have kept it down either. We got a different med and he took that, so I thought it was all behind us. I was wrong. He is now afraid of medicine and afraid it will make him gag or throw up. The antibiotic wasn’t bad tasting to me. I struggled to get a dose in him for several hours and I couldn’t. He was terrified. He was crying and shaking. He was making himself so upset that when he did actually get some in he threw it up. I put it in juice which didn’t fool him. I tried it with some other foods he will eat like apple sauce. Didn’t work. I called the doctor the next day and asked for advice. The first thing out of the nurse’s mouth was “you are the boss and you have to make him take it.” Like I was some person letting my child walk all over me. I said “well… he already has feeding issues. We have been in therapy for over a year for it. This isn’t just your normal case of “make him do it.” She gave me one decent suggestion and told me to call our feeding therapist. I emailed the feeding therapist with the suggestion of taking the medicine with chocolate ice cream because it might mask the flavor. She called me and had me bring him in with the medicine and ice cream. She had dealt with this before. The feeding therapist tried 4 different “delivery methods” and it took 45 minutes to get one dose in him. She decided that he was too upset and this was just going to set us back, so she called the doctor and asked them to try chewables (which they didn’t even know were still being made.) Chewables that night were just as difficult. I spent 3 hrs trying to get it in, I told him he would have to get a shot if he couldn’t eat it. The therapist said he might have to go to the hospital if he didn’t take it. I did every single thing besides hold him down and force him to eat it. He vomited up the little I got him to chew. He was terrified, feeling guilty and feeling isolated. The next morning I called his doctor and explained to another nurse (the first nurse wasn’t there) what was going on. I asked them to just give him a shot – that he told me that would be better than taking medicine. I waited for hours for a call back. Finally I called and got a different nurse or assistant on the line who told me to just sit on him, dribbling the medicine into the side of his mouth slowly so he couldn’t spit it out. I tried once more to explain that this wasn’t a normal case and that this wouldn’t help the situation. I told her he wasn’t spitting it out, he was vomiting it up. She had the nurse I talked to in the morning call me back. She said the doctor suggested the same thing. I can’t tell you how upset I was. I have spent almost a year and a half and a lot of money building up trust with my son surrounding food issues and the things that go into his mouth. I told her I would not be holding him down and forcing medicine in his mouth for this reason. Even after our food therapist called and told them that this was setting us back they still didn’t listen. I decided to wait until Monday, see how he is feeling, and if he isn’t better to go back into the doctor’s office and talk to them face to face. The nurse even offered for me to bring him in and have them force him to take the medicine. I said “first of all, I will not allow someone to traumatize my son when we have worked so hard on this. Second of all, what do you want me to do, bring him in for the next 19 doses twice a day?” She saw the flaw in her idea.

I am so frustrated about all of this. Even my son’s doctor – who knows us well – doesn’t understand what he goes through with food and feeding. They seem to think it’s all just ridiculous and that if I just tried harder he would be eating normally. If they could come to ONE therapy session and see his anxiety and the work it takes on a daily basis to get him just to bring new foods to his lips, they might understand a LITTLE. To compound all of this, the sensory processing disorder he has isn’t recognized by the schools or the medical community as something that affects his life enough to need help from the special ed department. I and hundreds (if not more) of other parents with kids like this know it does. Know that learning when everything is too loud or too smelly or too invasive of space or when he is particularly “unorganized” can be close to impossible. You can’t imagine how frustrating all of this is unless you have been there.

I have mostly stopped talking about his feeding problems. Mostly because people treat me like a bad mom or a push over. I don’t want to deal with that if I don’t have to. People I love very much (and more than one) have said “I just make my kids eat what I say.” Which really hurts my feelings honestly. I try my best and force feeding him will only cause more problems. Some kids aren’t traumatized by that. My kid is. I think force feeding an upset child is abusive in any case. It undermines the trust in the relationship and it causes a bad relationship with food. But in my son’s case it could cause serious longterm setbacks in our progress.

I am not a perfect mom. I have been the mom who just fed my son what he would eat because I had given up. I am not that mom anymore. I work very very hard to help him expand his diet and we have made big strides. But today I just feel lonely and frustrated and I hate everything that has to do with feeding/medicine/drinks/eating. I feel inadequate and misunderstood and angry at the medical community excepting our therapists. This may have set me back as far as it did him. Excuse me while I go curl up in a ball and hibernate for a few hours until I can face food again.