Goodbye House, Hello New Year

This morning we officially had to say goodbye to our home of the last 11 years. The kids walked through the house saying goodbye room, goodbye bathroom, goodbye kitchen, etc. I cried a little more with each goodbye until I finally had to send the kids to the car so I can sob.

As I was getting ready to walk out of the house I saw this little bottle on the counter. Matt put it there because he wasn't sure what to do with it. I wasn't sure what to do with it. I fell to my knees. The little bottle saved and destroyed my baby in 9 weeks. At $38,000 a vial I could never bring myself to throw it away. This little bottle represented everything we have gone through in the past 5 years. This little bottle reminded me of what I had to do to my son in order to stop those wicked seizures. Those were hard, dark times in our lives. We managed to get through them and will hopefully manage to get through these next hard times.

Since it is New Years Eve we had to continue our tradition. We've been trying to get Mike and Renee Loftus to go with us for a few years, but this time they finally gave in. Puppy dog eyes and telling them you are moving apparently does the trick, that and spending the night at their house so they have to go with you! Every year we order pizza and park in the Harrah's parking garage. We feel it is the best view, no crows, less traffic, and the comfort of your warm car! Mike and Renee followed us, since Renee would get lost if she didn't, so we pulled all the carseats out when we got there and threw them in their vehicle. We all squeezed in the back of my car and picnic'd with pizza. Matt even paid William a dollar to try a bite and he did! What a super special memory I will cherish forever!

After the fireworks we headed back to the Loftus' house for a midnight toast. WELL, we told the kids it was midnight anyway! Our plans were to stay up until then, but not a single one of us including the adults made it that long. I'm pretty sure we didn't even make it until the East coast midnight. I'm so thankful that I was introduced to Renee 10 years ago. You are the most amazing friend and I'm so sad I won't get to spend as much time with you after we move, but the distance will never change our friendship. Thank you for the most amazing memories!

Last Day In The House

The movers were her packing the truck all day today. It's so hard to realize that we have to say goodbye to this chapter of our lives. I'm nervous for what this is going to do to my family. I'm nervous for what this will do to Jayen. He has been having a hard time already today; he pooped his pants twice. He hasn't done that in a long time. I hope he can handle all the changes that are about to come our way. We are sleeping in the house tonight but then aren't sure where we are staying again. Thinking about heading back to Wynot for the rest of the week. Then we could get a little more time with family before the kids start school. I guess I'll figure it out tonight after these guys leave! Or it might be late enough that my eyes shut as soon as my head hits the pillow. WAIT, I don't have a pillow. They packed that too!

Making the best of it!

Not sure what happened today, Jayen woke up this morning with the biggest bloody nose. I think this cold is getting the best of him too. I just worry so much that the uncertainty in our lives right now is affecting him so much! Packing again today.

 

 

Jayen has found a way to "help"! I think he has missed daddy being here and being his big helper. Plenty to do today and plenty to do when we move. Jayen might be able to put this bed back together by himself soon!

 

They found somewhere/something to play with in all this chaos!

Anonymous strikes again at the Kuchta Christmas

We were able to squeeze in Christmas at Grandma and Grandpa Kuchta's house in the middle of all the chaos. We are living out of boxes, literally we couldn't find our suitcase so we packed a box to bring back. The packers will come back and finish on Monday, so everything is in shambles. We are so thankful to have every last minute with family before we leave. That's the hardest part about moving, knowing we won't be able to see them as often as we like. I hope I don't miss out on too much of my nieces and nephews growing up. My sister is a senior in high school and I won't be there for her "lasts". But we will make the best of the situation and hopefully they will all be willing to travel! 

Godmother Nicole gave Hunter this cute Don't Tip the Cow (Jenga) game.

Jayen's Godmother Allissa spoiled him rotten!

Just missed the hug from Brilyn and her Godfather Tyler!

But got a good one of Jayen and his Godfather Tom (or at least I think that's Tom under all that hair!)

I gave my Godson Ryot some new camo! I hope he loved it.

I think grandma and grandpa love their new Jayen rock. Hope they display it in the front yard!

Grandma and grandpa kept a little card until the very last present. I knew immediately when she handed it to me what it was. I couldn't believe it and was in tears before I ripped the envelope open. Anonymous struck again. Last Christmas I received a card from "Anonymous" with a large amount of cash for Jayen to support him educationally. This year she did it again. I'm in awe and udder amazement that someone would not only think of my son again this year, but to do it without the need/want of a simple thanks. So I know that you periodically read this blog so my plea to you is that you understand how much you mean to me. Your care and compassion melts my heart and reminds me of the true meaning of Christmas. I strive to be like you and can't wait for the day I am able to pay it forward. I am so thankful to have met you. I believe I know who you are, but will let you remain anonymous if you wish. I've only met you once, but will remember you always! 

I will remember these time always. I'm sure they will help me get through the hard times we will soon face. 

Last Christmas on Bryan

The only thing better than being a kid on Christmas is having kids for Christmas! I love hearing the kids wake up Christmas morning in awe and amazement. Last year we started a new tradition that Santa only brings the kids one gift each and the rest have to come from mom and dad. This year mom and dad focused on things we need for the new house. Each of the kids received a new bedding set for their new rooms. Jayen loves his new Spider-man set, Brilyn can't get enough of her Elsa bedding (if she lays in bed her face completes the picture of Elsa), and Dalan is ecstatic about his Seattle Seahawks bedding. I hope this helps bring excitement for the upcoming move. Maybe mommy needs a new bed set too!

Of course the kids were more than spoiled again this year, but I think seeing their faces from their Santa gifts was priceless! Santa always knows what they really want. Brilyn was given a brand new bike with training wheels (Elsa of course), Jayen was grinning ear to ear because of his new train table and train set, and Dalan got just what he wanted with a Hex Bug set. 

Christmas was magical this year, but it is time to clean up the wrapping paper and take the tree down. Yep, we had to take the tree down the same day. Didn't want to take the chance of any ornaments breaking with the packers. Next year the tree is staying up until Valentine's Day!

Christmas Eve Traditions (kinda)

Christmas is one of my favorite holidays! But this Christmas definitely felt different. With the packers coming the day after Christmas there weren't a lot of decorations around the house, there wasn't an amazing spread of food, and the "joy" of the holiday just seemed to be lacking. Matt and I agreed and tried to enforce with our families to go much smaller this year. We didn't need more things to pack, the kids didn't need more toys, and to stick with more necessities or gift cards! But we tried to keep up with some of our family traditions. Christmas eve, as most families, we set out cookies and milk for Santa and always leave reindeer food in the front yard. This year Dalan had a green addition to keep the Grinch away from our house. 

We also kept our tradition of opening one gift on Christmas Eve; their new ornament! (I was slacking and forgot the pajamas and movie) I love finding ornaments that helped show their interest for that year. Dalan received a Toothless and Hiccup ornament from the movie How To Train Your Dragon 2. Jayen received a Husker football player with the number 5 just like his jersey. Brilyn received, of course, an Elsa ornament. 

Hopefully next year we will be settled in our new house and have the Christmas mommy wanted. But I'm sure there will be others requesting our presence at their house too! 

Polar Express

The Autism Society of Nebraska was hosting a Polar Express event at Twin Creek Cinema. We were so fortunate to get tickets to join the event. They went all out for the kids. They were each given a golden ticket, a conductor punched each ticket, and at the end of the show they all received their own sleigh bell. What a great event! So glad we could get away from our packing for a minute and enjoy this family time.

Our new home!

We found a house! After looking at around 50 houses, we finally found one. It wasn't necessarily the house that sold us though. The neighborhood was amazing. We walked to the nearest school around the time school was dismissing. I cried on the way back. This neighborhood was what I was looking for. It felt so safe. It felt like home. Kind of gives us a reason to want to move.

 

Quick before we leave

Daddy just got home yesterday, but we needed to put the tree up before Christmas and mom and dad are taking off to go house hunting tomorrow morning. The tree was put up in record time and ornaments were added while quickly ushering kids off to bed. Hope the rest of the holiday season is not this same rushed sense.

 

Inspiration comes in little packages

During our extended stay in Minnesota for Jayen's brain surgery we met the most incredible young lady and her family. Miss Olivia was in the hospital the same time as Jayen and had a surgery very similar to Jayen's. It was so nice to be able to share our knowledge with their family and for Olivia to see what she was about to go through. We, in return, loved that Olivia could express how she was feeling. We could ask her questions that we wanted to know about Jayen and she could articulate for us in a way Jayen couldn't. We miss them a lot and can't wait for our next visit.

This week I received a message from Mark, Olivia's dad.

 

Olivia invited me to her school today for some sort of presentation. Didn't know much about it. The other kids started giving talks on people or events that influenced or inspired them. All the other kids had a self-portrait on a big screen behind them as they spoke. Olivia got up and at first I thought the teacher put the wrong artwork up, until I realized who she was talking about. It was pretty moving stuff and once again I find myself being taught about life by my kids. Thanks for influencing and inspiring me.

 

 

With permission from Olivia, here is her report.

 

" beep, beep, beep. "

What was that irritating noise? 

    I was just waking up for my Anesthesia,  so everything was spinning and blurry.  

" mom." clattered footsteps were coming my way. I heard a lot of mumbling and deep breaths "Is she ok? will she be alright? Can you. Oh my! Is that good? Wait, what about...? " 

SILENCE. " mom " I stuttered again. "Oh, you're oka-" "where am I?" " well, honey you Are in the hospital" "wher" I quivered "hos- pit- all" "oh. " more footsteps were headed my way, I was shocked when I heard " pill time!  " Putth-uh " the pills did not go down well and when I say well I mean at all, they were all choked up and never went down. 

  Post - surgery. - day two,

After a hard nights sleeping I woke up I knew where I was, I knew how to talk, I knew I was in good hands and I KNEW IT WOULD BE A WHILE, But one thing I did know was how to walk. I had get exercise so I would " walk " with two nurses and hold my saline pole at my side.  All the other kids in the epilepsy unit were smaller and younger than me, so it was kind of odd walking around in the part were they would play.  Although there was one little boy that me and my family were quite fond of, he was only four years old! Again smaller then me. He had one of the same surgeons I had. My parents started talking to his parents, and once I heard his story, lets just say I was sincere and wanted to know more since we were both struggling with our seizures.  See, all the way back before surgery, I had these seizures called partial seizures. They were small, quick little jerks. I'd have up to 70 or 80 a day along with full blown grand-mall seizures every other week. Those were 2 to 5 minutes long. Once I even had 25 minute Grand-mall! Jayen the little boy was going through similar things except he had multiple Grand-malls in a day and they were on an average of 10 to 15 minutes long. I found this amazing, but not in the good way. Jayen was only four years old!

That is an inspiration. If a four year old boy could go through what I was going through, or maybe even more severe then what I have.

And not only that, I was lucky we had doctors that could help my case that weren't far from where we live. In fact, very close. This strong family traveled from all the way from the crisp chilled Nebraskan air, oh and don't forget the two other kids they had to drag along with them.  After my parents got to now Jayen's parents well, me and Jayen started playing around more. He gave me a daisy he had made with the children's community center ( a group of high school and college students that came around with cool art projects for you to to do when your bored . ) in fact,  to this very day that plant is still at our house living a nice planty life. Jayen was a pretty cool four year old, who loved spider man! So I gave him a daisy and multiple spider man drawings. 21 days later I got to leave the hospital. Sadly, Jayen didn't leave until a week after me. We had both said our goodbyes and parted our different ways. No more seizures, baby! Well for me that is maybe a week out of the hospital. Jayen started having more seizures :( . This was posted on Facebook for us to see when I heard the news. I was devastated. My eyes were almost tearing up. This was a pattern that continued for a while ...  But one daFacebook post had just said,

" Jayen has just gone one week without any seizures! " 

Releived and happy, I knew things were looking up for the both of us.

" if a four year old boy could go through what I was going through... Well that is a true inspiration. "

 

I would like for Olivia to know how much of an inspiration she is to me, Jayen and my entire family. You and Jayen are the most amazing, inspiring people I know. You will move mountains!

NEVER a dull moment!

#LifeWithJayen lives on! Today the kids were in regular form...Chaotic and Bouncing off the walls. Matt had a friend come over to help fix some of the things required to sell the house. Poor Evan had no idea what he was in for. I laid Jayen and Brilyn down for naps and asked Evan what he needed for supplies so I could run to Menards. I thought the kids were almost asleep so asked Evan if he would keep an eye on them and tell them to go back to bed if they got out. I was gone for only 20 minutes, returned home, painted the board so it would dry, before I saw Brilyn walking out the front door soaking wet. I knew this wasn't going to be good. Jayen and Brilyn thought a war with the faucet sprayer was a great idea. There was water EVERYWHERE! I ran downstairs to grab some towels and saw the water leaking through the floor. I sent the kids back to bed, mostly because I didn't want to yell at them. After I cleaned water off of every surface in the kitchen, I made my way to their rooms to talk to them. I smelled a strong odor coming from Brilyn's room. I flipped out again when I realized she got into her fingernail polish and painted her FINGERS and shirt. After that mess was cleaned up, I was done with naptime and made the kids come outside and help me. They wanted to work on the house just like Evan, so they went to the garage and grabbed daddy's tools. While I was holding up a board so Evan could nail it, Jayen and Brilyn were fighting over the hammer. I heard Brilyn scream and Evan say, "Oh Shit!" and knew it wasn't good again. The claw of the hammer hit Brilyn in the face and broke the skin. She probably needed stitches, but I wasn't sure. I had to leave at that exact moment to pick Dalan up from school too. I was out of butterfly Band-Aids so on the way home I had to stop for some. Baker's was out, so I had to wrestle three kids through another store.  I couldn't believe the trouble these two could get into. Is it bedtime yet?