Visiting the Hales

On Monday, we went to Becky's house for dinner and to see her chickens. Micah told us all about them. She knew the breed of each chicken, how many eggs they typically lay, and their pet name. Becky slow roasted a pork on her Traeger grill and it was basically a small slice of heaven. I seriously never knew pork could be so good. It also came up that Becky cuts her dogs hair herself and we somehow talked her into cutting Rocky's too. Thanks Beck!

The Drive to Utah

Jon and I had originally planned to have two weeks to get to his family reunion and back. But when we got in clinical trials, we switched a vacation week so that we wouldn't have to use FMLA for one of the St Louis visits. So that meant one week for the trip out. We decided to try driving through the night. Around 1am, I took about a one hour nap while Jon drove. Then we kept each other awake for the a few hours. Around 4am, I drove while Jon napped for an hour. At 6am, we switched back and I napped for about 30 min. I woke up to Jon pulling into a gas station....that was closed. And, a sign had read that it was the last gas station for 20 miles. And, we had just hit empty. I love I-80. So, we decided to wait for the gas station to open. Jon napped while the kids and I just sat there. They were actually really good. I let them out of their seats and we just sort of hung out. We were in shorts and it was about 50 degrees outside, so way too cold to get out. Around 8am, we decided the gas station wasn't going to open. We said a prayer and decided we needed to keep going and we would make it to the next gas station. It was a great teaching moment because we explained everything to the kids and told them that we were going to need Heavenly Father to help us get to the next gas station. He did and we made it safe. We also made sure to say a prayer to thank Him for getting us there. Back on the road, things were going well again. Until we noticed that they car was getting really loud. Or had it always been this loud? I climbed in the back to try to fix the shaking windows when our back tire blew. We pulled over, put on a spare, drove 25 miles on the spare to a tire shop and bought all new tires. An hour and a half later, we were back on the road. We pulled up to Bradys at 3pm. We made the trip in 24 hours on the dot. Even with our rather lengthy setbacks. The last hour was probably the hardest. I started to get delirious and really needed to sleep. I kept falling asleep but didn't want to fall asleep because I didn't want Jon to fall asleep so I would doze and jerk myself awake and make sure he was still awake. I think I was driving him crazy :)

Lucky me, I got to share foot space with Rocky the whole way.

This was coming down Parleys Canyon. I drove this canyon many times and I can't remember ever seeing it so green.

Annabelle's Blessing

The second week of June we made the long trek to Utah for the Brady Reunion. {And that trek is cause for a whole post in itself. I'll get to that one of these days} But while there, we blessed Annabelle at the Brady's house on Sunday, June 7. My Aunt Charlotte made her beautiful dress based on one that I saw online. It turned out beautiful and I also plan to take more pictures (with a headband because I forgot to pack them) so I will post those soon. Jon gave her a beautiful blessing. I can't help but feel like this little lady needed our family and we needed her. She completes us and I'm so grateful we have her. I am sure I am just beginning to see the scope of why we were lucky enough to get her. It has been so fun to see Vanessa and Benson adore Annabelle. To put my kids' spacing in perspective; Vanessa was Brigham's age when Brigham was born. There is actually more space between Annabelle and Brigham than Vanessa and Brigham. Anyway, this is the first time I've had kids old enough to adore the baby with me and it's the funnest thing. They love to talk to her and hold her. Everything she does is exciting and cute. She is on the fast track to being one spoiled chic.

Just Because

May

 May was crazy, so here is the recap in pictures. While trying to sell our house and move, we got a call that we could bring Benson up to St Louis for a screening in clinical trials. It worked out that my parents were flying into St Louis two days later and were able to switch their flight and come early to help with the kids while Jon and I were filling out forms with doctors. Here we are starting the trek to St Louis. Our car stereo is having serious issues that (2 months later) are still unresolved so we get to deal with lots of awesome cords.

 We had two days of doctor appointments mixed in with time at the zoo, hotel pool, and the science center. My parents stayed in St Louis for a day and waited for Steph and the boys to fly in and we drove back to Springfield to finish packing. Then everybody helped us move into our new house! While we had so much family around we did an early birthday party for Vanessa! We also had an adults only dinner at our favorite Ocean Zen!

 This is my new fridge and I love it. It has to be commercial size or something because it is enormous. The freezer is where you really feel the difference though. It's just wow.

 So Benson was accepted into the trials so on May 18 we headed back up to St Louis for his first spinal injection. For the first injection he was admitted to the hospital and stayed overnight and then was released. Jon and I took turns being with Benson and then being with the other three. We also had the kids all at the hospital for short bursts.

 Pre-Injection picture. Cure SMA!

 This was just before bed, several hours after the injection.

Then we headed back down south in time to finish cleaning up the Springfield house. We also picked a few strawberries from the patch that we would only own for a few more days. Then we closed on our Springfield home and are now officially Nixa residents. Phew.
Owning two homes was stressful :)

Easter

Life is still wrapped in the chaos of moving and Easter was no different. It was also conference weekend and I am still trying to catch up on talks that I missed.  Saturday we had two showings so we were basically gone the whole day. We were able to come back home around 3. We caught an hour of conference and then died Easter eggs. They each did four eggs. Last year we did Easter baskets and a hunt on Saturday and I loved that it kept the Sabbath more holy. But that wasn't an option this year so the Easter bunny came on Sunday. Vanessa and Benson woke up and we let them find their baskets as soon as they woke up. But we made them wait to do the egg hunt until Brigham had woken up. After Brig woke up, he looked for his basket. It was coooold outside. And he was wearing shorts and a tshirt for jammies. After Vanessa and Benson had waited a good 30 minutes for Brig, I told all of them not to go out for the eggs until they had jackets on. While I was getting those, Brig busted outside and filled his arms with all the eggs he could hold. Little stinker. It was kind of funny though. He also refused to put warm clothes on so he hunted for Easter eggs freezing his little buns off. I feel really guilty about what a stress mess I am and how I am spending 80% of my time cleaning the house so I tried to make up for that with some more decorative snacks than normal. They didn't take much extra time but the kids thought they were pretty fancy.

I Believe in Miracles

I wrote this last year on Benson's blog but I wanted it recorded here

I Believe in Miracles

Having a son with a very obvious physical disability and living in the Bible belt, I hear at least monthly something to the effect of "miracles happen" or "God heals."  I don't believe God will heal my son.  But I believe in miracles.  Being born, raised, and believing in a faith with every fiber of my being that has the restored priesthood- the same priesthood Christ used to heal the sick and raise the dead- I have no doubt God has the ability and the power to heal my son.  Usually when someone tells me to have faith and believe in miracles, I smile and nod.  But my heart wants to tell them of all the miracles we have seen; though they haven't included him miraculously taking up his bed and walking.
I would tell them of when we were first trying to figure out what was wrong, how the Lord guided and directed our decisions, how he lead us to the right doctors, and how he protected our hearts from utter devastation.
I would tell them of his early ability to communicate.  How he has been blessed to tell us what he needs since he was 18 months, around the time he lost all ability to crawl.
I would tell them of all the people that have reached out to help, how their small contributions of both time, money, and equipment have made it feel like we are less alone; have taken away some of the weary and strain.
I would tell them of the miracle of getting his first manual chair.  How we were in school and could never afford a $5000 chair.  But how we found someone willing to sell one for just $2200 and then our family all chipped in and helped.
I would tell them of days of sickness, when he is coughing and choking and I feel the fear in my heart.  Of God's comforting arms for me and quick healing for my son.
I would tell them when surgery was just two days away; stomach flu was dropping everyone around us like flies, myself included. Then Benson got a fever.  A priesthood blessing, a nap, and four hours later he was fever free and surgery went as planned.
A surgery that was decided on by much prayer and fasting; a gtube- which enabled us to give him better nutrition and brought back strength he hadn't had for months.
I would tell them of days when my heart hurt so much I didn't know how I could go on but found strength in my husband, my children and my God.
And I would tell them of Benson's own prayers.  Of his power chair breaking but working again, if only for Halloween.  Prayers to get better when sick.  Prayers to be strong.

So yes, I believe in Miracles.  My life is a daily witness to them.  And I thank God every day for the miracles he sends me.

All The Babies

Brigham

Benson

Vanessa

Annabelle

A Few Highlights of My Last Few Days

Monday I had to take Vanessa to co-op. Our house has been listed for just a couple days and I'm still trying to figure out how to handle the constant cleaning. Before going to bed on Sunday, I cleaned the house spotless including a vacuum and mop. So Monday morn, we got up and got ready and as soon as I could I sent the kids outside. I picked up a few last things and left myself. I put the ramp down for Benson which apparently took the very last of my battery juice. Dead battery. Awesome. I walked to all of my immediate neighbors and no one was home. Okay, so I know one neighbor was home but they are not nice people and I was afraid to ask. I ended up having to call my VT, who came to my rescue. While we were waiting, I asked Vanessa to water the plants but Brig ended up spraying Benson with the hose. Change Benson. Feed Annabelle. Jump the car. On our way. And only an hour late.

I drop Vanessa at co-op and the. Head to Sams Club. I park and unload everyone only to realize I forgot my wallet! The library is close by so we go there instead.as we are walking into the library I get a text from the Realtor that someone wants to see the house. Glad I cleaned the night before because after getting Vanessa, I will have 15 mins to get my wallet and Rocky and make sure everything is picked up. We make it and call it mission accomplished. 

A few hours later I run to WalMart- by myself!!- to grab a few things Sams doesn't carry. I drove Jon's truck. After parking, I sit in the car a few minutes and think of five billion things I need to do as well as try to remember what I'm getting. Then I jump out and lock the door. They are manual locks. I suddenly realize I don't have the keys. Crap. I just locked them inside. And, is that the trucks engine?! Ya, the truck is definitely still running with the keys locked inside. Awesome.

So fast forward to today. There is an agent showing at 9:30. So again, I clean the night before. Brig has been wearing undies on and off and doing ok with it. So I decide to put undies on him. We are going to the park so if he pees, it'll be outside. At 8:30 I sit down to feed Annabelle. Even though it feels early for her to eat; she's pretty sure she's hungry. I have a text from my realtor saying tour is at 9:15. 15 min earlier than I thought but we can do it. Cut Annabelle off a little early but she's satisfied for now. Everyone's ready. Brig pees all over the kitchen floor. Change Brigham and mop the floor. Put Benson in his power chair. He heads to get some toys and bits of mud fall out of his wheels. Send Benson outside. Vacuum floor. Find Brig on the counter eating a banana with a single bite out of four plums. Load everyone into the car and head to the park. I have to take Rocky. I tie him up somewhere. He starts whining. Of course. Annabelle is crying again because she's hungry again. Move Rocky to a new spot. Sit down to feed Annabelle. Benson comes over and has to go potty. I stop feeding Annabelle and take Benson potty. In the bathroom, I laid Annabelle on my nursing cover and strapped her onto the changing table. That won't work when she starts rolling. Maybe a stroller will be necessary. Potty business done. I finally feed the poor child. The rest of the day was fairly uneventful. Until we heard that the septic repair on the house we are buying will cost $6800. Yikes! Now we have to negotiate who is going to pay that with the sellers :( 

It's been crazy chaos around here for sure. But some fun things going on too. Annabelle smiled several times on Sunday morning(at three weeks to the day). It was during a time that she was awake and looking at us so it was the real deal. She is also smiling tons in her sleep though too. It always makes me wonder what they are dreaming of. 

With the high humidity, Brigham's hair is curly and adorbs.