Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, November 5, 2017

Basher, Crasher

I thought maybe I was struggling to be a good mom to Asher because I just wasn't being patient or, I was not talking to him about things. I thought I wasn't picking the correct battles and that I was wrong in so many ways with so many things... So I thought I would start documenting how things were going so I could go back and pinpoint some triggers. 

. 8:15- wakes up- mad by the way. I can't get his breakfast fast enough because I am currently trying to get May ready for STEAM club.

8:35- Get him and May exact same breakfast set out on the table and call him to eat. Throws second huge fit of the morning, includes laying on the floor screaming. It was the breakfast he asked for, a gogurt and part of a left over donut. I also offered to make him an egg, cereal, a waffle, and toast with peanut butter. He said no to all. I leave MayLee to eat and him on the floor while I start getting out my clothes. Two minutes later May is finished and comes to my room, Asher follows carrying his Gogurt and donut. I ask him to go back to the kitchen with food.

8:50- The alarm for STEAM goes off and I go to find my shoes. Yogurt is all down the hallway, floor, walls, and child. He is not at the table. I grab the wash clothe and attempt to speed clean. We get shoes on and shuffle everyone to the car. 

8:56- Asher throws yet another fit because he isn't dressed. I explain we didn't have time due to the clean up, and that we are just dropping off May and will come back to change him. He demands I dress him. I carry him to the car crying and buckle him in while he clings to his shirt. 

9:07-I am fairly certain as I unbuckle his seat harness that it's not going to be a smooth home re-entry. He slides out of his chair, try's to dive for the back seat to hang out till I am done waiting, so that he can easily go to the drivers seat of the car, he loves to twist all the dials and knobs; changing settings and scaring the heck out of me when the volume is ear splitting. I pull him from the car. He tries to climb back in. I shield him from the car with my legs. He runs to the stairs to pout. I bypass him, go inside, set down my bag, take off my jacket, wait for him, ask him nicely to come in, his reply is always no. I close the door, but rethink that since his new favorite thing in the garage is all the hand tools daddy stores in there on the tool bench. I have flashes of him taking the tools to my car. I count to five and tell him it's time to come in. I go out to him, he closes his eyes when I get near. "You can't see me if I can't see you" mentality. I pick him up and carry him in. He falls to the floor when I try and set him down.

9:10- I start journaling.....

9:27- He goes to the fridge and gets 3 cheese sticks, ziplock bag, and a pen. He wants to color on my journaling page. His pen sucks, I offer him mine. "I doin it", "look it mom" he loves journaling too. 

9:30- we shower without too much drama. I am pretty sure it's cause I let him bring in his string cheese. Cheese in the shower is a new thing for me. 

9:39- doesn't want to get out. I wrap him in a towel and hold him on my lap to rub his back until he calms down. 

10:12- I try to make the bed. He loves when I toss him into the pillows. Eight tosses later and I need to finish. He try's to help me. It takes sooooooo much longer. I get anoyd that it's such a long process, but glad for his help, kind of....He runs to my closet to try and take out daddies head lamp. I tell him to put it back, and he chucks it back in the drawer and slams the drawer loud. I decide to move the head lamp way up higher. This is the 100th attempt for Ash on that head lamp. I make a mental note to add like item to his Christams list. 

The next couple of hours I decide I can't be taking so much time writing. I need to be present to focus solely on making sure we both survive the day. Although it's filled with.. 
 Finding chap sticks screwed all the way out. 

Then the next day Halloween candy taking a bath. That actually turned out nice since the heat of the water melted all the bars, I just got to chuck the whole thing. Over and done. 

And the Christus figurine eating some of Asher's lunch.

Everyday is an adventure. 

Today I text Jeff,

I never thought I would yell, "Asher, where is the stick of butter?", "tell mommy where the butter is right now!". I found the wrapper which made me worry he had eaten the whole stick.  ALex found it stashed in the recliner behind the Velcro liner thing. I was fixing dinner and he takes ingredients off the counter to sample. He went behind the recliner to unwrap and sample the stick of butter in less than 1 minute. Not only sneaky, but mega fast....

He has also destroyed a small portion of my Thanksgiving decorations. *sign* I can't have nice things. We can't go anywhere because he is a runner and destroyer. Please bless, he grows out of this stage sooner rather than later. In the mean time. I will be home cleaning up messes if you need me.  

A little STEAM

Full STEAM ahead. 
Here is a photo of May doing some Math at STEAM club.
Here she is learning about structures and building

Halloween extravaganza

Big shark 
Here is Alex who seems surprised I wanted to take his picture during the school costume parade.
Eden is okay with it. 
We grew our own pumpkins in our garden this year. It is fun to have them to carve. They weren't the hugest bunch, but I will start a little earlier next year and plant on some of the warmest days and cover if it get cooled off again. I am going to be an awesome gardener some day, for now I am sub par and I guess that it will have to do. I can't be perfect and everything/anything.

Preschool costume parade

Halloween dinner was spider web bean dip, The web is sour cream. I just put it in a sip lock and trimmed of the corner and used it like a piping bag. 
And mummy dogs
Ry helped me with Eden's hair for her masquerade costume.

Tight pants... Jeff did an awesome impersonation of Jimmy Fallon... If you haven't seen it, check out Jimmy Fallon and Will Ferral. Kills me. 
But creeped us all out with this mask. 

Mummy drawing

Eden's art is really coming together. I love that her mummy gir has body parts that now are greater than sticks and that this is in motion and leaning as if walking. I love that the green minion thing is eating blood, and that her mummy has bows and a necklace. 

St. George century

Last bike ride of the year. We all headed down to sunny St. George. A gorgeous ride through Snow canyon, a very fun "with swim suits" this year time at Sand Hollow, plus hotel swimming and geocaching. 

The water was a little colder than fun for me, so I only got in as far as I had to. We played on the beach the rest of the time. We also rented a Jet ski and had a great time taking turns going with Jeff. 

We like to write up posters for Jeff. I must have missed May's somehow.

Asher and Mine says, " Welcome to cycling, You're now broke" and Jeff's biggest fear: If he dies, his wife will sell his bike for what he told her it cost" Hahahaha!!! If you are a cyclist, you know exactly what I am talking about. 

Smiling because he is just about to cross the finish on the last 100 mile bike ride.