Christmas Joy at Work

Ask anyone how they've been this month, and you'll probably hear, "We've been so busy!" So I won't say it. Except I have been. :) As evidenced by my last post titled "Thanksgiving."

I feel like I don't talk about my job very much on the blog, because it's one of those things that there's just so much to it that I'd have to go in depth, so I just say nothing. But the thing is, I really, really love my job. I have worked at the Spina Bifida Association of Kentucky for more than a year and a half in programs, and I was recently named Executive Director. Like I said, there is so much I'd like to say about it, but never a great time to go on and on about it, so I'll keep it at "I love my job." It's very meaningful and rewarding and challenging and fun and just awesome.

December has to be one of the most meaningful, rewarding, challenging, fun, and awesome times of year in my job. We came home from Boston two days before Thanksgiving, I spent the weekend frantically shopping online, decorating my house, and doing as much as I could to prep for Christmas. Then it was ON. At work, I had 7 holiday parties, yall. SEVEN. The first weekend of December, I drove to Lexington (1.5 hours) Friday night and Pikeville (another 2.5 hours east, then 4 hours back) on Saturday. I took Georgia with me to those two parties. It felt strange going without Nate, but he wasn't cleared for traveling yet. The next weekend, we had a party for adults with SB in Louisville on Friday night, Louisville kids on Saturday (Nate and Georgia came to this one), and Owensboro (2.5 hours away) on Sunday. That Tuesday we had our board/staff party. Then last Friday Nate and I went to the Bowling Green party (2 hours).

It was a LOT of travel, and frankly exhausting, but it was SO worth it, and so much fun. Each of the parties was awesome. For Pikeville and Owensboro, it was the first time we have had programs there, and the families were so excited and appreciative. In Louisville, Lexington, and Bowling Green, we met new friends and got to visit with people we've known for years. More than 350 people total came to all the parties! I heard things like, "I have learned more in the last two hours (from talking with other parents) than I have my son's whole life." In addition to just having parties, we also brought stockings for Santa to give each child at every party. The time and work and volunteers that went into making that happen was huge, but again, it was so worth it to see the children visiting with Santa and receiving their stockings full of gifts. It is such a pleasure to be a part of that pure Christmas joy.

  

So, that's where I have been in December! And merry Christmas to my Spina Bifida family! You are so important to me!

Thanksgiving

We had a very relaxing Thanksgiving. No chopping, no peeling, bo roasting, no baking. We got up late, straightened up the house, then my parents got here, and they went and picked up a catered Thanksgiving dinner! At our absolute favorite--Buca di Beppo. Dinner was yummy, and it took us maybe 10 minutes to clean the kitchen afterwards. :) It was awesome. Here are some pics from the day.

We were sitting around the dinner table eating pie ...

My mom: So, do you all want to go black friday shopping tonight? I thought we could go to toys r us. I'd like to finish up all my toy shopping.


Me: But ... do you even know what you need to get?

Mom: Pretty much.

Me: Does Toys R Us have specials on the stuff you want to get?

Mom: I don't know ... I've never been Black Friday shopping before. I thought it would be fun.

Me: Okay, you can't just go and browse, you know. You have to have a strategy and know what you're going for. And if they don't have what you want on sale, buy it some other time when its not so crazy.

Mom: Well, you make it sound not fun.

Sooo... we went to Toys R Us at nine. The news crew was there. There was a long line, of course, all the way to the end of the building. We waited until 9 and then got out of the car because we didn't care if we were the first ones in. We started walking to the end of the building and saw the line actually extended along the side of the building. We kept walking, and it appeared the line might also wrap around the back of the building. There were at least 1,000 there. Security at the door stopped the line at 200 to wait for people to go through. We left.

THEN my mom said, "Let's go to Walmart. Maybe it will be better." (Hahahaha!) So we went to a smaller, less popular walmart. I walked around that whole store looking for a couple things on my list and couldn't find them. Around 10 till 10, I started getting really nervous because people were getting antsy and not so nice. They had their hands on the $10 crock pots and would probably fight you for one, not to mention the laptops and TVs. We left.

2 hours later, we returned empty handed.

My mom: If I ever want to go shopping on Black Friday again, please remind me of this nightmare.

So Friday we got all the Christmas decorations out and put up the trees, and Saturday I finished decorating everything. Every year I kind of dread dragging out all the Christmas stuff because my house feels full and cluttered enough without three trees and a bunch of knick knacks everywhere. But then when I see how excited the kids are and get everything cozy looking, I love it.

I was really trying to make the most of my long Thanksgiving weekend because I know that December will be a crazy month at work. I did almost all of my Christmas shopping online, I put Georgia's toddler bed together (even though it's still hanging out in the living room because there hasn't been time to take her crib apart ... or the energy to deal with the first night in a toddler bed), and we even made Christmas cookies.

Look at Georgia with red frosting all over her face. She came at me with this face and asked for a big hug. And another hug. And I just laughed as she unknowingly rubbed red frosting all over my shirt. Totally worth the hugs!

I am a super awesome cookie decorator. (sarcasm)

What do you do whenn you still have a bunch of dough and are tired of cutting out cookies? Cookie cake! This was supposed to say Merry Christmas. Again, I am awesome.

A couple other cute stories--

Georgia has now named more of her babies. There is, of course, Walmart Baby. Now there's also Pink Baby and Sissy. And one that I think she is calling Donut but I can't be sure.

Nate, on Thanksgiving Eve: What are you thankful for, mama?

Me: Well, I'm thankful you're all better and Clive is gone.

Nate: Oh. I'm thankful for trains.

On Thanksgiving Day, I suggested we turn on some Thanksgiving music. I turned on one of our XM stations that plays music for whatever the current holiday is. A few minutes later ...

Nate: Hey, these are Christmas songs, not Thanksgiving songs!

Me: Oh, sometimes on Thanksgiving, they play Christmas music.

Nate: What do they play on Christmas, Valentine's Day songs?

Boston Day 23 ... and HOME!

Yesterday was a loooong day. I got up around 7 and got ready and woke up Nate at the last possible minute to get him downstairs and let him eat breakfast by 8, because that was when our cab was due. I had called to schedule the cab the night before, then I called at 7:30am to confirm that it would be there at 8. Well guess what. Ten after 8, and no cab. I called the guy back, and he said he would check on the cab. At 8:20, I called again and he didn't even answer. So I went all Julia Sugarbaker on his voicemail.

"Hello. My son has an appointment with a world-renowned NEUROSURGEON in 10 minutes, and we're going to be late because your cab didn't show up. So now I have to walk six blocks IN THE COLD, with my son IN A WHEELCHAIR. So thankyouverymuch!

It's funny now, but of course I was fuming the entire six blocks, huffing it to make it to this appointment in time. We got there at 8:35, and a nurse practitioner said Dr. Warf was in surgery and couldn't see us until 10.

There are no words.

So we went down to the lobby for Nate to see the "ball thing" and goof around for awhile, and went back up at 10. Nate looks great, and there are no concerns. Dr. Warf is "happy happy happy" with the results. We gave Dr. Warf a gift--a bow tie (he wears bow ties) in blue and white, University of Kentucky colors, since he's a fellow Kentuckian. I wrote him a thank you card. I said we came here for his reputation, but what I most appreciated about him was that he listened to me and took my concerns and opinions and ideas seriously and changed his plans based on what I knew was best for Nate. He seemed very pleased with the gift and card.

We caught a cab back to the Yawkey Family Inn to finish packing up our stuff. I took some pictures of the house. It's a gorgeous old house that at some point was a fraternity house for, I assume, a Harvard fraternity. Then someone, I guess the rich old Yawkey family, sunk a lot of money into it to restore it to the beauty it is now.

This sweet woman was playing the harp for guests as they came and went. She let Nate try it out. She kept telling Nate how great he was doing in his manual wheelchair. She has some kind of neurological issue and must use a motorized chair.

This is Bert.

Anyway, we got a cab to the airport, got some lunch, and Granna and Nate played a couple hands of cards before it was time to board the plane. One perk of your kid needing a wheelchair is that you can board first! Which means on Southwest you get to sit toward the front, and you're among the first off the plane too. Oh! And the social worker at the hospital got us 3 free tickets from Southwest! Never hurts to ask.

I was worried about how Nate would do on the 2 hour flight to Chicago, but much to our amazement, he FELL ASLEEP. This is unheard of. He just leaned over on Seal the Sea Lion, and was out, no screaming. Thank you, Jesus.

When we got to Chicago, my mom helped us to get to our gate, then she had to get to the other side of the airport to her gate, because she was flying back to Pittsburgh. So Nate and I were on our own for the last flight, and Nate was very good. He might have bugged the guy sitting next to us a few times by trying to get our Talking Carl app to talk to the Talking Carl app on his phone, but hey they guy was just asking for that. It was only a 45 minute flight, and Nate and I were both SO excited to get home.

It seemed to take forever to get to baggage claim to meet Blake and Georgia, and coming out of the elevator, we sneaked up behind them. Yay! It was so exciting! Georgia started jumping up and down and squealing! Lots of hugs and kisses. We went over to retrieve our baggage, and  Georgia goes, "I misssed you, Nate!" and gives him a big hug. It was so cute. Those two had a lot of catching up to do, and were just so glad to see each other again.

When we got home, I realized we hadn't eaten in about 8 hours except for some peanuts and crackers on the flights. Blake suggested bacon and eggs, and I thought I would fall over from the joy of eating a Blake Payne breakfast. Then I decided it would be nice to take a shower, and I didn't even have to gather up all my clothes and towels and shower stuff to go to the bathroom (like we did at the Yawkey house). Just so nice to be home.

Nothing gets you in the spirit of Thanksgiving like coming home from a hospital stay and 3 weeks away from home. I'm sure I'll be back to the old stresses and annoyances pretty soon, but for now, I could not be happier with home and my family. Sometimes the hard times make the good times even better. Live life like you just got home from the hospital! Happy Thanksgiving!

Boston Days 18-22 ... HOME STRETCH!

Has it been five days? They've all just kind of run together. Here are some of the most exciting happenings.

Last Thursday we had some visitors--a friend, Stephanie, and her son Noah, who I've known only online for more than 5 years! We went on a walk to the park and the boys played some. It was a great distraction from the boredom.

Nate was starting to get around slightly better that day. He's still not walking, but he can get around when holding a hand or on to something.



This kills me. Nate thinks the Talking Carl app on my phone is the funniest thing in the world. These two had us laughing so hard we were crying.

 So, all week we said that Friday would be the day we went for a train ride. We did a little (very little) research and decided we'd take the subway (the T) to Waterfront Park. There is a T station close to us, and we could take the green line to the blue line, which would take us directly there. So we walked to the station, figured out how to purchase our tickets, and then when the train got there, the driver (are they called drivers?) had to get out and let the ramp down for Nate's wheelchair. He asked us what station we were headed to so he would know where to help us out, and we said Government Station. He said, "Nope, it's not handicap accessible, no elevator." So he had to let us off at the station before that and gave us this complicated plan for how to get to the Waterfront, starting with "Go sit and wait on that bench right there." We thought we were waiting for the orange line, so we were confused when we saw green train after green train. After a few trains, one of the drivers actually got out and asked us where we were going and said, "You would have sat there all day." :) He had us get on his train, go down two stops, get on the orange line, go one stop, and get on the blue line to go to the next stop. An hour and a half later, we got there. Even Nate was sick of riding the train by then. We were starving, and there happened to be a restaurant right outside the station, so we stopped to eat. While eating, I checked the GPS on my phone and found out we had gone 5 miles from where we started!!!!

Then we went outside and saw Boston Harbor, took a quick picture, couldn't stand how cold it was, and caught a cab back to the family house! Hahaha!

On Saturday, we had to run some errands and walked to a street where there were actually shops and restaurants. It was a nice surprise. Also, here's Nate sitting outside in his pajamas (it was really too cold for this) watching the green line behind the house.

Yesterday (Sunday) I woke up with a raging migraine. Took some medicine, got a little something to eat, drank some caffeine and went back to bed until 1pm. Then Nate acted like a little monster for a couple hours. That was pretty much the gist of that day. Not fun.

Today was a lot more fun. :) My friend KT who had come to visit us at the hospital came back to visit and brought her little girl, Taylor. She picked us up and took us to the Museum of Science Boston.  Remember the "ball thing" from the children's hospital? Well, there's an even bigger one at the MOS.

Of course Nate found some trains.

 

I think Nate and Taylor's favorite part was this little track where the kids could run/roll and see how fast they are going.

So fast he's a blur! 1 meter per second, to be exact.

And here's just the view from the museum. Boston is a pretty city!

Some other things worth noting. Nate has been using the potty a lot this week!!! He's doing great! He's nowhere near potty trained, but he's slightly less resistant to using the potty (sometimes) and he has a lot of success and knows when he needs to go. I'm very pleased with the progress. We have just happened to have the time to work on it.

One of Nate's favorite activities here has been playing cards with Granna. They play War, Go Fish, and all sorts of made up games. They've done crafts, like with popsicle sticks and glue and paint. We've played lots of board games, and Nate sometimes has problems with being a sore loser or a bad winner, but he's learning. His two favorite sayings right now are a whispered "Yes!" when something good happens and everything is "weird."

So now on to the really important stuff! WE ARE GOING HOME TOMORROW!!!! I know I said last week that Nate's appointment with Dr. Warf would be today, but it was moved to tomorrow morning at 8:30. Not really the ideal situation since Nate hasn't been waking up till like 9:30, and when he gets up earlier he has a meltdown (that is putting it mildly--it's actually like screaming until he passes out) around 4pm. Well, tomorrow at 4pm we will be on a crowded plane! Oh well, I don't know those people, and all I care about is getting through tomorrow and arriving home at 7:35 p.m.!

I don't anticipate any problems at Nate's appointment with Dr. Warf. His back is healing awesome, as is his head. He tires out a little more easily than usual, but that is a good thing, so he can rest. I have been working little bits at a time on getting him back up and walking some this week, but he hasn't been too interested. He LOVES that wheelchair--too much! But tonight while I was sitting here writing this, Nate came up next to me and said, "I'm going to try to walk a little bit" and just took off across the room!!!! It was so great! His first independent steps since his last surgery!

(If you're viewing on facebook, go here to see the video of Nate walking.)

I am so thankful to be going home. But I'm also thankful for the care Nate has received here and for Dr. Warf (we got him a UK bow tie as a thank you gift!). I'm thankful for my mom coming here with us, because I would not have been able to do this on my own, no way, no how. I'm thankful for the family inn, where we have not only received low cost lodging but also been able to spend time with other families who are going through the same kind of things we are and worse, and it's helped us feel not so alone. I'm thankful for a husband who could take care of our baby girl while I'm gone, and a mother in law who came three weekends in a row to help out at the house. I'm thankful Nate is healing well and on the road to recovery.

God has had his hands all over this. It has not been easy, but every need has been provided for. Thankful doesn't even come close.

Boston Days 14-17 ... Holding steady

Lots of people are asking how it's going, which means I have been neglecting the blog! There's not much exciting going on here, except Nate is doing very well, which is exciting in itself.

We are staying at this family house, and it's really a great place. They have everything here that you would need, and more. A couple times a week or more, people come in and cook a big dinner for the people staying here, or bring bagels for breakfast, or make brownies. The house itself is very old and has been restored beautifully.

So it's a great place ... but we would so much rather be at home, of course. The main problem is that we feel stuck. At home, if I don't leave the house for several days for some reason, it's no big deal because I know I CAN. Here, it's hard to get out. Plus, I really miss my girl and Blake.

Monday we took a walk to a nearby park, but then we realized Nate really can't play on the equipment right now. So he raced his wheelchair around a walking track. 

Yesterday we took a walk back toward the hospital to do a little shopping--got him a "Harvard Medical School" sweatshirt, teeheehee, and some more groceries--and went to an actual restaurant to eat. By the time we walked back home (Nate in his wheelchair of course) he was exhausted. We have to keep the outings to a minimum. The doctors really don't like him sitting in a wheelchair for extended periods, but he LOVES his wheelchair! Maybe a little too much!

Today it is raining, so we have been stuck inside. I have plenty of work keeping me very busy, but my mom and I have been racking our brains trying to figure out what to do with Nate for the rest of the week. Tomorrow we have a visitor coming, a friend and her son who is Nate's age. So that will be a fun distraction. We might also head over to the hospital for a craft fair. Exciting stuff, right?

Friday, we are determined to ride a train. There are cable cars, trolleys, amtrack, and a subway line all very close to us. Not sure where we're taking that train, but the ride will be the main attraction. Oh! It took us about a day to figure out that a train runs right behind the house here, so Nate can sit out there and watch a train run every few minutes.

Clive has not made another appearance. Nate's back is flat, and healing very well. Besides having a bad haircut, his head looks great too. He hasn't had any headaches or any other pain, except when he runs his hands into walls while he's wheeling, Oh and he's had more hip pain. Wierd! He gets tired, and I've made him take a nap most days, but he didn't today.

So I've been jotting down some funny things Nate has said over the past week. Like one day at the hospital when he was all upset over everything, out of nowhere he started crying. When I asked him what was wrong, he said he was just laying there thinking, and he daydreamed that he went to jail, and there were some mean boys there who told him that flowers don't need water! And he just bawled about it! Hahaha, it was hard to even comfort him because it was so bizarre.

A couple days ago I was looking at Nate laying in bed with his shirt pulled up so his belly was showing. I said, You sure do like to keep your shirt pulled up like that. He said, "It's so I can put Seal the Sea Lion's belly on mine, and it feels soft."

Despite not going to school, Nate is trying to read everything he sees. Sometimes he gets words right, but other times he insists he knows better than Granna and I do. One day my mom was writing his name, and she wrote Georgia's name too. Nate said that was NOT how you spell Georgia. That spelled "Gor-gah" and that her name should have two J's in it! You can't tell him any different. Then one night downstairs we saw the movie "Up." Nope, it's not Up, it's called "Oop." Several times he has asked to watch Oop, and we just have to go along with it because he won't hear of it being called Up.

So in this case, no news is good news. Nate's fine, and we're in the home stretch.