ISIS trials and starting Preschool

Benson had his third injection in the ISIS trials. We drove up as a family and spent the night in St Louis. Jon took Benson in and once he is off to sleep he comes back to the hotel and we all arrive back at the hospital long before Benson is awake. The procedure takes only about twenty minutes but he has to lie flat for one hour. So they have him asleep for most of that hour. He has to stay at the hospital, for six hours after the injection. This is purely for study purposes. They do vitals, blood, etc every couple of hours. After six hours he can go back to the hotel and then we go back to the hospital in the morning for another exam at 24 hours post injection. That exam is a part of the study as well.

After our morning appointment, we went to the zoo to see the new polar bear. He is two years old and already around 800 pounds. They think he will get to be close to the 1500 lb max that polar bears can reach. That is a big bear! Although, I felt really bad for this bear because St Louis is really hot. Polar Bears like the cold. I just can't imagine he liked being there.

Randomly, I think the favorite part of the zoo was the misting fan.

A week after the injection, we had to go back to St Louis for more appointments, but just for a day trip. Jon did not get FMLA time off for these so it was just me going. I arranged for a friend to watch Vanessa and Brigham. And then I prayed really hard that Annabelle wouldn't scream the whole drive. I made several trips to Wal Mart, trying to find a new speaker for the van for Benson to watch a movie. I also found a little crib music playing thing for Annabelle. I spent $50 on these things just hoping we would all make it without screaming and cursing too much ;)

The drive went way better than I feared. I think I would even call it a success. There were some tears but nothing too crazy. And, I made it home around 10pm, literally just ten minutes before a HUGE thunderstorm and torrential rain.

There is another little girl in the study that is on the same schedule we are. So they are always right before us for procedures and we are always there the same day. She is a very smart, very sweet little girl. Benson finally opened up to her more and started playing and talking. It made my heart happy to see him making friends.

School started while we were in St Louis. I decided to have Benson do preschool at the Early Childhood Center because they will provide OT and PT during preschool. He is only going two days a week and he is getting an hour of both OT and PT. It's working great so far. His teacher would like for him to attend more often but I don't know if I can swing it with school. It gets kind of crazy hauling the kids around that much. And Brigham seems unable to cope with the car time and being rushed from here to there. This week there was more than usual going on and I feel like he spent more time kicking and screaming on the floor than normal.

Benson's teacher asked us to fill out this worksheet for the kids. I asked Benson each question and these were his answers. The last one went more like this:

Me: "Benson, what makes you special?"

Benson: "Huh? I don't know."

Vanessa: "Benson, I really like your chair."

Benson: "OH! Ya. My chair. And {should shrug} well, I'm just awesome."

Perfect. Yes, you are.

Just Some Crazy Chickens

It Might Be An Obsession

I take A LOT of pictures of my babies.....    

While they sleep.........What is more perfect than a sleeping baby?

In Their Words....

January 27, 2015

Breakfast convo

Brigham: "Mom, I know this place! It's my house!"

Me: "Yes it is!"

Vanessa: "It's OUR house."

Brigham: "No, it's MINE."

Vanessa: "It's Mommy's, Daddy's, Mine and Benson's."

Brigham: "Daddy is my best friend and Mommy is a genius."

Feb 23

Benson playing with Chapstick

"It's like Bob. Not Bob like grandpa but Bob on Monsters vs Aliens."

April 12

Me: "Do you want orange juice Benson?"

Benson: "Do we have grape juice?"

Me: "No, just orange."

Benson: "So orange juice, milk, and water are the only liquids we have?!"

May

Vanessa: "Mom, put a flower in my hair so I will look like a Princess."

Brigham: "Mom, put a flower in my hair so I will look like a Princess."

June
Brigham: "Mom. We need to put this in the car. It's orange juice for the car." (it is orange washer fluid)

June 15

Me: "Brigham, Benson wears undies now because he's a Big boy."

Brigham: "Why does Henry wear undies?"

Me: "He's a big boy too. And Sam. And Simon. Do you know any big boys that wear diapers?"

Brigham: "I do!!"

June 15

Brigham walking into the house, "Mom, I'm poopy."

Me: "Brigham! You're wearing undies!"

Brigham: "Oh." Shoulder shrug. "I pooped in my undies."

June 17

Vanessa: "Mom it's pinch black in here."

June
Vanessa: "Mom, I'm just going to sleep in the boys room for a little bit. I just feel safer in there. Ya know? It's so dark."

Brigham has crazy dreams. Often times they seem kind of morbid. He wakes up still in the dream and telling us about what happened like it was just yesterday.

"Brooklyn is broken!"

"Kayden is dead. I punched him like that (punches the air) And he went like that (drops his head like he's dead). I'm sorry Mommy. I'm sorry Daddy."

"Did you get the dinosaur bones?"

"The worms are going to get me Mommy! They're on the walls!"

June 12

Steph Brady: "I'm going to miss you Benson."

Benson: "Ya. I'm going to miss Sam."

June 17

While in St Louis, we stopped by the town home where we lived while Jon did clinicals.

Brigham: "I want to live here."

Me and Jon: "Why?!"

Me: "Is it because there are lots of doors?"

Brigham: "And keys."

June 18

Brigham: "Dad I like your shirt."

Jon: "you do?!"

Brig: "Ya, I like your key on your shirt!"

Brigham tells Jon "your face is good." Or, "your face is not good." Not good means Jon hasn't shaved.

Brigham calls the lawn mower "the mow over."

Benson: "Mom, get my instruction machines.

Me: "ok. But they're called CONstruction."

Benson: "ok.Construction."

"But Mom, can I call them instruction if I want?"

June 29

I helped Vanessa fill this out for Primary. She said she wants to go to Texas because she loves all the shiny windows on the big buildings when we drove through Dallas.

July 5

Brigham: "Benson Robert!!!"

Benson: "I'm not Benson Robert. I'm Benson Matthew."

Brigham: "Benson Machew."

Benson: "No, Benson MaTHew."

Brigham: "Benson Mathew."

July 7

Brigham: "I want what Benson's having!"

Me: "ok. Benson will you share?"

Benson: "No, Mom. I want it all!"

Me: "Buddy, I cooked three eggs!"

Benson: "Fine."

I give Brig a few bites on his plate.

Brig: " No Mom!"

Benson (in a baby voice): "Here. Do you want more?" Gives him more.

Brigham: "Mm. This is amazing!"

Benson: "I know, right?!"

Brigham says something I can't hear.

Benson: "Oh, is that true?"

Brigham: "mhm."

Benson: "Ok. Do you know what true means? It means that it really happened. That, like, you really said it."

July 10

"Mom can I help you make dinner? I love helping you so much I just want to kiss you."

July 11

Brigham on Face Time to Grandma and Grandpa: "Mommy has contacts and I have big muscles!!"

July12

Vanessa: "Mom, how come you aren't as strong as Dad when you're both, Ya know, big."

Me: "Cuz Daddy's a boy and they're usually stronger than girls."

Benson: "I'm going to be so strong Mom!!"

July 12

Writing letters to cousin Sam.

Benson: "Mom, Draw me and Sam."

Me: " Ok, how should I draw you?"

Benson: "Together."

Me: "do you want to be sitting or standing?"

Benson: "Standing."

Me: "Do you want to be standing or in your wheelchair?"

Benson: Uh, in my chair."

Cake and Ice Cream

Another homeschool activity. It happened to be right after Pioneer Day but I didn't have the materials I wanted to incorporate it all so it was just learning about ice cream. And, we saw Curious George make an oven to cook something outside so we wanted to see if it would work.

I had them each prepare their own baggies of ice cream and then we shoved them all into the same #10 can. I knew I saved these for a good reason!

Then we used mugs to make a cake. They each got their own mug. I didn't dare use eggs so we simply skipped that ingredient and I didn't exactly have them measure everything carefully. It was a bit chaotic with all of them doing their own. Brig and Benson thought it was really funny to blow on the cocoa and watch the dust go everywhere.

Cocoa dust face.

Here are our cakes in their "oven"

Then I put Annabelle down for a nap and we got to work on our ice cream.

Vanessa and I rolled it back and forth. She used her slippers to keep her feet warm :) Rocky was sent to time out because he kept trying to eat the cake outside and wouldn't leave the ice cream alone either. He doesn't really fit in that crate anymore.

Here is the finished product. The ice cream was pretty yummy. The cake--was a little funny :)

The kids also got their toys back. I had collected everything that was left out one night and hid it. Benson noticed after a few hours but it took Vanessa over a day before she missed anything. We are definitely in need of a toy bailout.

A Better Mom

When I was younger, I started making notes in my journal. They were called "Mom Notes" and "Grandma Notes." These notes were telling me how to be an awesome Mom and Grandma from a kid perspective. 

I think my nine year old self would be a little disappointed in my Mom skills. I am not exactly the Mom I thought I would be. Because unbeknownst to my nine year old self this Mom business is hard work! It always seemed like Moms had all answers. I thought my Mom did. I also thought she had every thing under control. She didn't make mistakes. If she got mad it must have been because I did something wrong. The thought never occurred to me that she was not a perfect person and could lose her temper like anyone else. I somehow thought I was the only one learning and growing an she was already done or something. 

I realize now it is quite a different story. Being a Mom is hard and there is never a day I go to bed feeling like I have zero regrets for the day. Inevitably, even on a good day there will be a moment when I wish I hadn't said something or responded in a better way. And on a bad day, I will generally regret my entire attitude. 

The hardest part is wanting them to know how deeply I love them. How desperately I want to be more patient, more fun, more healthy, more happy for them. I want to be that. But I fall short so often and I worry that my inadequacies as a person might make them feel like I don't love them every second of the day. I want them to never question whether or not I love them. I want them know, that I love them fiercely. I keep trying to be a better Mom. They are what make me want to be better. My happiness is their happiness. And in the end, I want them to grow into happy and successful adults and feel like I did everything I could to help them.

My Crazies

Country Life

I am learning that living in the country means living with all kind of critters. Little critters that my children are constantly wanting to catch and then keep. The hurt bunny was one that Rocky actually brought to us, although we don't think he did the damage. We weren't able to save that one. Jon found these other two while he was mowing the lawn. We catch frogs daily. The kids have had up to seven in a box at one time. One random day we had a turtle in our garage that hung out with us for a few hours. There's always something lurking around. I think the kids will be stoked when we finally finish the chicken coop and run and they have little baby chicks to play dolls with.

The Hardest Part

You can call it adjusting to four or post partum depression; but life is just, well, overwhelming these days. I have a hard time getting my kids out of the house, at all. Not because I don't want to go places; but because I don't have the energy to fight them into their clothes, through their breakfast, into their shoes, out the door and into the car. Because it really is a fight. The whole way. Even when it's somewhere they want to go.
Then there is the other issue. The fact that I feel paralyzed lately about going new places without Jon. If I don't know what to expect, I don't want to get caught somewhere that Brigham could have a meltdown, Benson could be stuck and Annabelle will be screaming with hunger. Just the thought of it all makes my stomach turn because it happens all too often.
I've decided the hardest part about being a parent to a child that has different needs is not being understood. People really and truly just don't get it. I feel judged sometimes by people who don't understand why we would buy a new car, a new house, re-do a bathroom just for him. I realize it shouldn't matter what others think but it all goes back to that need to be understood. I am surprised though by the number of people who use a wheelchair parking spot when their wheelchair user isn't even with them, a single person who uses the largest bathroom stall just because it's bigger, people who take the wheelchair bench at church because it's at the back.
When we mentioned to our bishop that we really did need the bench for wheelchairs, he kindly remarked that we should just get their early enough to get it. I nodded but I wanted to burst into tears. If he only knew...
I go to bed around midnight every night because I relish the few hours I have to myself. Trying to get as much done as possible. If I want to go to bed earlier; I really can't anyway. I have to give Benson his tube feeding, two "servings" an hour apart. I could use a pump. If I gave him formula. But he is thriving on the tubie mix that I blend for him every other night. I wake up a few times a night to feed the newborn. And, I am still getting up a few times a night to turn Benson. As little as once and as much as four times. By the time morning rolls around, I feel as fresh as a rotten egg. Then we go through that amazing morning routine. The one where I chase Brigham around the house, trying to get him dressed. Feed Annabelle. Dress Benson. Dress Annabelle. Do Vanessa's hair. Redress Brigham. All the while, my mood is escalating from it's a beautiful Sunday morning, to "why is no one listening to me and at least pretending to get ready?!" We end up at church filled with the Spirit and singing "Love At Home."
My desire for Benson to experience life the same as everyone else, just with the necessary adaptations is sometimes so strong it is painful. We bought a new house to try and make it better for him. We want for him, what we want for our other kids. Happiness, independence, fun activities to do. But for Benson; making this happen is a challenge. It also require tons of my time and service from his siblings. Personally, I am becoming a better person because of this but too often I fall short of the challenge. I get selfish with my time and don't want to go catch frogs for him for the one hundredth time. I sometimes find myself thinking things that only bring sorrow and self-pity. If only... Those words never do anyone any good and they are painful. It's better to get them out of my head as fast as they come.
Luckily for me, the atonement is real. I need it hourly. And at least I can start afresh, hourly.