I'm just now capable of discussing last weekend

Last weekend was a doozy. On Saturday, I went in to work for a couple hours. Tried unsuccessfully to take a nap (why do I ONLY get packages that require someone ringing my doorbell when I'm trying to take a nap?).

Then Nate and I got ready for our big date. Kosair Charities is SBAK's biggest grantor, and every year they have a big gala to give out the grants. Our whole family went two years ago (before I started working there) and it was so terrible it was comical. Really, you have to go back and read that story. Based on that mortifying experience, I was nervous about the evening. This time, I put a lot of care into finding a cute party dress, shoes, and clutch. I found Nate an adorable little suit.

Everyone fell over themselves for Nate in his suit and chucks! He was adorable. And unlike last time, I felt appropriately dressed. This year they had childcare, thank goodness, so I dropped him off there. But I was really nervous for the parade that Nate was supposed to walk in. The idea was that a Shriners board member would walk with or carry a "Kosair kid" in a parade and up on the stage. I prepared Nate best I could and just hoped he wouldn't fall or start crying because the music was too loud or say something loud and innappropriate. :) He didn't. He didn't even see me, and his Shriner was carrying him in. When he was up on stage, he had to stand very still and quietly for a long time, and he did great! He was introduced and taken off the stage, then at the end of the night all the kids came back on the stage. When it was over, I finally was able to go get him, and he was surprised that I was in there because he didn't see me in the crowd of several hundred people. But he was so great all night, and we both had a wonderful time.

Sunday morning we all went to church and then Nicole and Cade, Nate and Georgia and I all headed to Lexington for my playgroup. I knew I was going to be late, so I let one of the moms know, but then we were running late than I expected. We had to stop and get food for the playgroup, and I was just thinking about how crazy this weekend is. I was sitting at a stoplight and saw the light turn green and started going but looked down at the map in my lap to make sure I was taking the quickest route. But the brand new SUV in front of me had NOT started going yet. And I totally crashed into it. I can't believe I did that. I have never done that. Everyone was just fine, but the other driver and I were both shaking. Here's what my van looked like:

Ugh, our brand new (to us) van! It seemed fine to drive though, and the kids were getting antsy in the car (read: smacking each other), so we went on to the playgroup. There just so happened to be a new family there I had never met, and the dad was a former mechanic! He took a look under the hood and discovered my radiator was busted! He said the only way we could drive all the way back to Louisville would be to stop every now and then and pour water in it, but something about something I shouldn't touch ... I said, "I am not qualified to do this." So I called a tow truck and a rental car place. Later on, Nicole was pulling a wagon with 2 car seats and a tray of chicken through the airport ... It was comical. The bright spot of the day was having good friends at the playgroup to help, hug, and listen, and one friend even stuffed all of us in her minivan to take us to the airport for the rental car. We got home late that evening.

Then on Monday morning, Nate and I headed to Nashville for his big appointment to talk about his tethered spinal cord. I do enjoy our trips alone, even if they aren't for a fun reason. I made sure to get there extra early so Nate could watch the trains. Next we went to Urology for a renal ultrasound, which looked fine. Then we went to Spina Bifida clinic, and while sitting in the waiting room, it was like one of our Bowling Green playgroups! There were like 4 families I knew sitting in the waiting room, and we all chatted and caught up to keep our minds off things. Then when we were called back, I saw ANOTHER family I knew! It was like a SB family reunion! It was really neat that it happened that way.

So, just what we were waiting for, Dr. Tulipan came in and showed me the MRI scan. He showed me where the cord is tethered, and he showed me why it would be an easy fix. He asked me again what symptoms I was seeing. I told him about Nate's foot turning out and then decreased movement, and also increased constipation. He said that although constipation can be a sign of tethered cord syndrome, the nerves he was seeing on the scan are lower than the ones that would cause constipation so he didn't think that was related. I asked what those affected nerves control: feet. He told me I had to make a decision and asked me if I'm against surgery. I told him I was not against surgery, but I was scared, since his last surgery was when Dr. Tulipan repaired his back before he was born. He told me that this surgery would not necessarily restore any function that had been lost. The goal of the surgery was to prevent further loss of function. At that point it was very clear what we needed to do. I asked him when he would want to do the surgery, and he said, "How about next week?" I thought I would fall over. He said in a week or two. We have since scheduled the surgery for Sept. 7.

Really, even though this stinks that Nate has to have surgery, it's pretty much the best possible scenario. The loss of function was significant enough that we noticed it and can't deny that it happened. But it is not significant enough to affect his mobility yet. So even if he does not ever regain the function that he lost--although I do believe he will move his toes again--he will still have the same mobility as before. I am thankful for that. I am also thankful that God has given me and Blake peace through this decision.

I think I am recovered from last weekend, but we're heading into another weekend now, with another playgroup tomorrow, and plans for all day Sunday. If I can't slow down, I'm just going to have to learn how to function at a faster pace.

First day of Kindergarten

Sunday we were all set for Nate starting Kindergarten on Monday, and while my brother-in-law was here he got a call that the first day of school was cancelled! A storm came through on Saturday (the same one that hit the Indiana State Fair) and knocked out power all over the city. My first thought was "WE COULD HAVE KEPT OUR NEUROSURGEON APPOINTMENT!!!!" Gah! But then I thought, no, it's still better this way. He still would have been exhausted for the new first day of school, Tuesday. Then Tuesday was cancelled. This is what I get for trying to scheme for prime appointments.

It actually worked out fine--I prefer starting school on a Wednesday because it makes for an easier first week. AND Nate got his new braces in yesterday so I could go buy him new shoes for his first day of school. Might as well tell that story here too. A couple months ago when Nate was fitted for the braces, for the first time he showed an interest in picking out what he wk,anted--blue padding, blue straps, and polka dots on the middle strap. But he called them circles. He has talked about these circles from time to time and he was looking forward to seeing them yesterday. Out come the braces ... no circles. The braces are never, ever what we ordered, and this was no exception. The polka dot strap was missing, and they don't fit well either. Good enough, but they aren't long enough to allow him to grow. So we have to return them, but we'll do that in a couple of months so we can get some wear out of them and still return them under warranty (the orthotist's suggestion). She said she could order us a polka dot strap, or she had a few there--a space picture, puppy dogs, construction machines. Nate wanted circles. She went in the back room to put his toe pads in, and it was taking like 25 minutes and I was getting frustrated. When she came out, she had a polka dot strap! She went back there and took different colored markers to a white strap and made one herself. It was so nice, and Nate loved it.

I took him to the mall for our search for a pair of shoes for these bad boys. I usually leave Nate at home and just take his braces (the one perk I have found for having a child who wears braces), but this was going to be a special shopping trip the evening before school. We stopped and ate and everything. Mama/son date. We went to Dillards and rode the escalator (highlight of the trip for Nate) up to the 3rd floor to the kids shoes, and he immediately spotted the Thomas rain boots. He was so excited. Of course they had one size, and they were too small with braces and too big without braces. Sigh. While I was picking out shoes, Nate took off running. I think the saleslady felt sorry for the kid wearing braces until I couldn't catch up to him. I lost him at one point. I didn't find any shoes there, so we ended up at Journey Kids and I got him some black chucks that he was very uninterested in. He wanted the sparkly bejeweled light up girl shoes. They WERE really cool. We had to go to Target for cat food and I found a pair of blue skater shoes that actually fit and matched his blue braces. He said, "Oh, mama, I want to wear these to Kindergarten!" Score.

While I was trying to get him ready this morning, he and Georgia were not cooperating, and I started to get testy and told him he needed to turn around and let me get his shoes on him or we would be late. He whimpered and said he didn't want to go. I knew he didn't have the words for what he was feeling. I said, "Are you nervous?" He said, "Yes, I'm nervous. I don't want to go to Kindergarten. I like it here at home." So for the 500th time we talked about how cool Kindergarten would be. Finally he said, "Okay, I want to go to Kindergarten now." He looked so handsome, and so grown up.

Georgia and I walked him to his class this morning.

When we got to the class, the teacher showed him where to put his backpack and lunch box and where his seat was. His crayon box was already out waiting for him so I got him set up coloring. The poor little boy beside him was silently crying while trying to color and his mom was torn up. I told Nate to be a good friend to that little boy, and he promised. I asked if he was okay, and he said yes. I told him I loved him and he said I love you too. Then he said bye! I walked out in the hallway and looked back to see if he was panicking or anything, but he was just coloring, and just fine. What a big boy.

You have to ask Nate a lot of questions to get anything out of him. Here is what Nicole, Blake and I have pieced together about his day.

• The only kid's name he remembers is Sam, the boy who sits beside him who was crying.
• His favorite part of the day was lunch.
• He likes his teacher, and the helper.
• His class went to the library, but there were other kids in there so they went back to their class for 30 minutes and went back later.
• He got to go to the gym and see the gym teacher again (we met her last Thursday) but they weren't allowed to run around.
• No one got in trouble today.
• In circle time, he didn't get to sit on the N. (The rug has the alphabet on it. N is his favorite letter.)
• During circle time, they went around and everyone said his or her name, and then everyone repeated it.
• They went on the playground and there is a yellow slide that is not too big or too small.
• There is a little girl who uses a wheelchair, but he can't remember her name. She is nice.
• He sat on the potty. (This is questionable because Blake asked him if he did, and he said maybe, and then later he told me out of the blue he sat on the potty.)

He had a great day and is looking forward to going back tomorrow. So I guess it can't get any better than that. I'm very proud of my big Kindergartener.

Oh, and an MRI update. Yesterday Dr. Tulipan called my cell phone, but I was in a meeting and missed his call--!!!! He left a voicemail and said he had looked at the scans, and Nate is tethered, which is not unexpected. He will show us the scans next Monday at clinic and we can talk more then, but it looks like it would be fairly easy to untether if needed. So ... that's good, I think. I really hadn't even thought to worry about it being a more complicated, tricky issue. We'll see him at clinic on Monday and hopefully get a plan.

Here I go again.

The last couple weeks I've had the pleasure of spending more time than usual with several adults who have Spina Bifida. Some smart, amazing, capable, kind, interesting people. They know they are among the first surviving generation of people with Spina Bifida, and they are showing all of us what that looks like.

I invited a group of these women to speak to some of us parents at an SBAK playgroup last weekend. It was a great afternoon with lots of encouragement and advice. But one story stuck out to me. One of the women brought her dad, and I asked him what it was like when she was born and they learned she had Spina Bifida. He said the doctor came out and told him, "The good news is your wife is okay. The bad news is your baby has myelomeningocele." Of course he had no idea what that was. He asked if they could fix it. The doctors said they could, but most people choose to do nothing and just make the baby comfortable. She would never be able to walk. She would be a vegetable. Her dad told the doctor to fix it. The doctor asked how he was going to pay for it, and he said he would rob a bank if he had to, but go ahead and fix his baby girl. That was 48 years ago. Now this woman is a full time nanny, is trying to qualify for the special olympics rowing team, and is like another mother to nearly all the local adults with SB. She's a special woman.

Today I hosted a group of adults with SB for a program about education options. And just like any playgroup where parents get to talking, when there are parents of adults with SB in a room together, the conversation at some point always turns to diagnosis day. My fellow SB parents, apparently the trauma of that day never fades. There was a mother there today who said when she entered the parking lot where we had the meeting, she had a flashback to 32 years ago, when she brought her baby daughter to this same building (it used to be a hospital for "crippled" children) for her first Spina Bifida clinic. She carried her six week old into the clinic and saw children using walkers and wheelchairs and she ran back outside to cry and "have a talk with God."

She then told her diagnosis story. Of course she didn't know before her baby was born. All they told her was there was a hole in her back. No official diagnosis terms, just "hole in the back." A pediatrician came to visit her the next day, and he told her they were going to send her baby to a real nice place where she could visit on weekends and holidays. He said the mom couldn't possibly take her home because she would be a "vegetable on your couch" and she wouldn't be able to afford her medical care. She should go home and try again and she would surely have normal babies. She told the doctor she was taking her baby home. She was only 19 at the time, and totally overwhelmed, but she went to the NICU morning till night every day. She still remembers she was in 5R in the NICU. The baby next to her daughter was named Christopher, but no one ever came to visit him and he had a sign on his isollette that said, "Do not feed." One day she asked the nurse what the story was with baby Christopher, and the nurse said he had Spina Bifida, and the parents chose to not treat him. Apparently he starved to death. That was 32 years ago.

This is mouth-dropping awful, right? Just plain archaic and cruel and ignorant and unthinkable. I'm so glad times have changed.

But have they really changed at all?

In the year 2011, moms are STILL told that their babies with Spina Bifida will be vegetables. The actual word "vegetable" is still used. Doctors still often advocate for the parent to give up on their baby. Now instead of waiting until full term to deliver and starve them to death, they deliver so early there's no chance the baby would survive.

I don't say this to be hurtful to anyone who has made this choice. I say this out of anger for how little the world has changed in the past 48 years.

For the record ...

This morning was Nate's Kindergarten Orientation. He got to see his new classroom, meet his new teacher, see his new classmates. He said he liked his teacher and that the playground was right outside his classroom, but he is shy with his new friends. :) I assured him all the other kids were probably feeling shy too, but after they all got to know each other they would be good friends.

Since I had taken the whole day off work, and we had some time to kill, Nate and I went to Walmart to buy school supplies (and he was a booger the whole time we were there) and then we took them back to his school as they requested, so he got to see it less crowded.

Then the two of us went to Nashville. Nate was excited to go to Vanderbilt because there's a "model train layout" (his words) on the first floor. I told him there would be time to see the trains, but we were going there for a test. I reminded him that we wouldn't be able to eat anything (after the huge breakfast I made him) the whole day until the test was over, but I promised we could eat whatever he wanted afterwards. He complained a couple of times about being hungry, but he got over it easily (much easier than I would have! I sneaked snacks when he fell asleep!).

We checked in, and the Imaging Department receptionist gave us fish food to feed the fish. I had to go to the restroom, which gave Nate exactly two minutes to look at the trains. Then they called us back. The anesthesiologist was very nice and told Nate they were going to take him back to a room and give him "silly air" that would make him laugh. Nate looked concerned. He said, "I don't want to laugh too much!" They promised they wouldn't let him giggle too much. I was relieved when the Dr. said he was going to put in the IV after they gassed him, because Nate really hates IV's. He was not at all impressed by my story about one of Nate's previous MRI's when he stopped breathing and his lips turned blue. He said he understood why that was a big deal to me, but it happened all the time and wasn't really a big deal. Hmph. The anesthesiologist carried Nate and Seal the Sea Lion away while talking to him and really distracting him from knowing I wasn't following. I received instructions that they would call me in about an hour and a half, so I could go get something to eat in the food court, but to stay close.

While in the food court eating, I was trying to take my mind off how nervous I was by checking facebook and my message boards on my phone. On the Spina Bifida Kids board I read a post by an expectant mom who just found out a few days ago her baby girl has SB, and she's still coming to terms with everything and learning more about her daughter's specific diagnosis. She said she was afraid of how this would affect her family and if her other children would suffer.

For the record, I understand her feelings because I wondered if our family would "suffer" when I was pregnant too. And just as I was thinking about how to effectively communicate to her that her family would not suffer ... I stopped and looked around. I was sitting in a hospital food court, with my stomach in knots and a leg that couldn't stop nervously bouncing, and I had just stuffed my face with a personal pan pizza and two scoops of Ben & Jerry's with the full understanding that I was eating because I was nervous. (For the record, I have been trying very hard to not eat while nervous/afraid/sad/lonely/happy/fill in the blank, but I just was not equipped to not fall back on this bad habit today.) I was waiting on a phone call from someone telling me my son was waking up from anesthesia, and he would probably be disoriented, possibly sick, maybe hungry.

Are we suffering?

I went back downstairs and went out to the Children's Garden and realized I hadn't prayed yet. So I prayed for Nate's safety, and doctors' wisdom, and clear answers. After I went back inside, it was only a few minutes before someone said, "Payne?" and I walked as quickly as you can walk without running through the maze of hallways to get back to him. He was whining and crying a little. The anesthesiologist said he did great. We got Nate to drink a little something, and he was supremely annoyed by the IV so the nurse removed it. We asked him if he wanted some crackers or something, and he said, "I just want to get out of here!" Hehe. He did not care about dinner. He just wanted to get back to the trains.

As I was getting his clothes back on him (they make them wear the funniest little hospital gowns), I was overhearing the family one curtain over from us. The nurse was explaining what to watch for--excessive vomiting, a rash, etc.--and the mom said they knew all that because they had just had the same test the day before. And tomorrow they are going to the oncology clinic, so they'll get their test results there. The boy is on his fourth round of chemo, so they are eager to see what the tests look like now.

Nothing puts things in perspective like a trip to the children's hospital.

We stopped by the trains once more, then Nate was ready to go home. He perked up after a few miles and was back to his silly self. Some of the conversations we had:

Me: What happened after the doctor took you and Seal the Sea Lion back to that room? Did they give you a mask to wear?
Nate: Yes. Mama, I didn't like that test.
Me: I know, honey. Was I there as soon as you were waking up, or did you wake up before I got there?
Nate: You weren't there the whole time?

Nate: Mama, look at all the colors in the sky!
Me: Oh wow, what a beautiful sunset! Do you know who made the sky look like that?
Nate: God?
Me: Yes! Thank you, God, for the beautiful sky tonight!
Nate: He can hear you!
Me: Uh huh
Nate: He says you're welcome.

Me: I love you, Nate!
Nate: I love you too!
Me: What else do you love?
Nate: Hmm. Trains. And cars. And Seal the Sea Lion.
Me: Oh, good ones. And Daddy and Georgia.
Nate: Yeah, and the ocean and waves and sand.

Nate: What's that light up there?
Me: Oh, that flashing light? That is a tower, and the flashing light on top keeps planes from flying into it because it's hard to see at night.
Nate: (pause) No, I don't think that's it.
Me: Ha! Yes, that really is it.
Nate: Nope. That's not what it is.

Me: What do you think Daddy is doing right now?
Nate: Hmm. I think he's watching my new train video.
Me: Nate, I was thinking the same thing!
Nate: (lots of giggles) And now I'm thinking about toy trains!
Me: Me too!
Lots more giggles
Me: What are we thinking about now?
Nate: The Daybreak train?
Me: Yes, that's exactly what I was thinking!
More giggles

Me: You and Daddy have that in common. You both like watching toy train movies.
Nate: Yeah!
Me: What about princess movies?
Nate: Yeah, Daddy likes whatever me and Georgia likes.
Me: That's true.
Nate: It really is!
Me: That's what makes him a good daddy.
Nate: Yeah.

For the record, what I will remember most from this day is not the hour of nervousness as much as the talking and giggling on the trip home.

For the record, when I am afraid, I am not trusting God.

For the record, there are no guarantees even for a typical baby. I will take Spina Bifida over cancer any day of the week. These are the things that have affected my close family and friends that suck worse than Spina Bifida:
--Depression
--Alcoholism
--Infertility
--Fatal cancer
--Losing a spouse
--Losing a parent
--Divorce

And for the record, we are not suffering. It is my PLEASURE to take care of this sweet little boy laying next to me on the couch, clutching a new train movie and grinning up at me way past his bedtime. Blake offered to take him today, but I wanted to be the one there for him. I am honored that God entrusted me with his care. He is NEVER a burden; he is a blessing. Even when he's a stinker.

Thank you, God, for Nate. And for perspective.

Spina Bifida boogie man

That's what one of my SB mommy friends calls it ... when everything is going just fine, and then BOO, it jumps out and scares you all over again.

Nate has been walking for 2 years now. Our shunt fears are long gone. The potty training thing has been frustrating, but we have a game plan. And we decided that when Nate starts Kindergarten (next week!!!) we will take our first hiatus from all therapies. Things were going very well. Spina wha?

Over spring break this year, we let Nate wear his short, shoe insert braces all week, and by the end of the week his big toe on his left foot hurt, and his left foot was turning out. That's when the PT really reprimanded us for letting him wear his little braces so much. (Her: "Did you not understand me when I said he could wear them 2 hours a day?" Me: "Yes, we understood you, but we did it anyway." lol) She said he was turning his foot because he was unstable and needed a wider base of support. But it was odd because his left foot has always been his straight one. The right foot has always turned out some, and I used to stress about it, but over time it has turned in quite a bit. Now all of a sudden the left one turns. And even with his taller braces, it hasn't turned back in. I don't even know if the short braces had any relevance.

So I have been asking the PT about the foot turning and she assured me it was because his braces were wearing out and he needed new, stiffer ones to provide support. I was still worried, and right after I got back from national conference, at the beginning of July, I called the neurosurgeon's office about it. We decided to move up his clinic appointment from September to August 22. That would be the first chance available to see the neurosurgeon, ortho, and urologist all at the same time.

In addition to the foot turning out, we have also noticed that Nate has been getting constipated more often lately. He had a belly x-ray and was pretty backed up, and I didn't even know it. If you're not immersed in this SB world, these signs point to tethered cord syndrome. All babies with repaired Spina Bifida have a tethered cord. When they do surgery, scar tissue forms, and that gets stuck on things. As the child grows, it can pull on it and start affecting nerves. The solution is a pretty major surgery to go in there and snip the tethering to release it. 

After we moved up the appointment, I really tried to convince myself I was being paranoid. Maybe we're just seeing things. Noo... he really is turning that foot out pretty dramatically. Maybe it was like that all along and we're just noticing up. Noo ... that is just dumb, lol. But I tried to put it out of my mind until we could see the doctor.

One night I was shopping at Kohls, and I got a text:

Blake: Nate can't move his left foot around in circles and he can't wiggle those toes
Me: What?!
Blake: I had Nate laying on his back and had him rotate his ankles--he can do the right one well but his left one he can't turn and I had him wiggle toes and he can't do it on left foot. I think that explains why he is turning foot out more--loss of control so turns foot out more since he can't spread out toes. That concerns me for tethered cord.
Me: (speeding home)

The whole way home I was fighting back tears and telling myself Blake was seeing things and just being a hypochondriac as usual. He has always been able to move all his toes. But when I got home I tested him too and sure enough he was not moving them. I told him to move his toes up and down like I was doing, and you could tell he was concentrating on doing it, and only the right toes moved. I could tell he was confused. He told me he only wanted to do it on the right side, he was better at it on that side. Blake and I just looked at each other, and I told him we would freak out after Nate went to bed.

And we did. I immediately got online and started asking my SB mommies what to do, as Blake was saying, "Get online and ask your mommy friends!" And I was stunned by the huge outpouring of support and concern and prayers--even still. This really is an amazing community. Normally I'm telling everyone else to calm down and not panic, and now I was asking someone to tell me that. I didn't know what to do--take Nate to the ER, call the on-call neurosurgeon, wait until Monday to call the neuro's office (why do things like this always happen on Friday nights!). I sent a facebook message to Mary, my nurse from the MOMS study at Vanderbilt, to ask for advice. I also called Kellie, another SB mommy friend, and came up with a plan, which calmed me down enough to sleep.

The next day I did call the on-call neurosurgeon at Vanderbilt, who was not at all helpful and told me to call the neuro's office on Monday. So we waited. And prayed. On Monday morning, I worked with the clinic nurse to get Nate scheduled for an MRI and visit with Dr. Tulipan as soon as possible. Turns out, Dr. Tulipan only sees patients on Monday (and I didn't have enough time to high tail it to Nashville for that day, and he sure didn't have time for us), and he's in surgery the rest of the week. Okay, the next Monday? On vacatiion. OF COURSE. So the next Monday, August 15, it is. I texted Blake to tell him. He reminded me that is the first day of Kindergarten. CRUSHED. That was really the first time I cried about it. No more "thank you, Spina Bifida, for making us better people." For the first time in a long time, I was angry and sad about SB. For the next few days I tried to come up with every possible scenario to fix this. We thought about planning an ER visit, until we learned that Nate would probably not even be able to see Dr. Tulipan that way. We thought about doing an MRI here in Louisville and sending it to Dr. T, but Dr. T wanted us to use his MRI. We thought about waiting until our scheduled clinic appointment a week later, but I was afraid the MRI might show some kind of emergency. I was going over all this with another SB mom at work one day, and she suggested we go down to Nashville for an MRI this week (before school) so Dr. T can look at it when he returns from vacation, but unless there was something crazy we wait until our clinic appointment. If she wasn't over the phone I would have hugged her! Brilliant! Why didn't I think of that? So I sent an email, and it was settled.

This Thursday is Nate's MRI, and I'm scared to death of sedated MRI's ever since the time they put him under and he stopped breathing and his lips turned blue. Only for a second, but it was traumatic for mama. Next week he starts Kindergarten. And the next Monday is his Spina Bifida clinic where we talk to Dr. Tulipan about what to do. He may say it's not that at all. He might say it's probably tethered cord but it's not bad enough to operate yet. Or he might want to schedule surgery. Gulp. Nate has never had a surgery since before he was born. I doubt a mom ever gets used to her child having surgery. But the first time? At five years old? I can't even think about it.

I'm scared. But I have the very best support system of SB mom friends praying for us and sharing their experiences and reassuring me. And of course my family and friends are supportive as always. I have come to a place where I realize that God is in control of this, and none of my scheming to get prime appointments is going to make a difference in the world. And it's a good thing He's in control, cause he loves Nate even more than I do, and he has good plans for Nate. That is so comforting. So I guess I'm not as scared as I was at first, and I'm totally trusting God on this one. Nate is in good hands.

Florida Vacation

We had not been on a real vacation for about 3 years--since Nate was 2 and Georgia didn't exist, so it was about time. My parents rented a beach house, and the four of us went with them, my brother, and my cousin Nicole and her son Cade.

The vacation itself was awesome, but the drive there and the drive back were not! It was like STRESS -> ahhh, vacation -> STRESS! We went to New Smyrna Beach, Florida, which took us about 14 hours with all the stops. On the way there we decided to head out on Friday night and drive most of the way and stop to sleep for a few hours before finishing the trip. We stopped around 3:30 am in Rome, Ga. This was a strategic stop. If we wake Nate up after 4 am, there's a possibility he will want to stay up! But before 4 is safe. Nate went right back to sleep, but Georgia kept me up for an hour being squirmy and then slept in while everyone else got up and ready!

Saturday's drive was going pretty well ... until we got to the Florida border. And it all fell apart! The kids started screaming, Blake started getting anxious, the movie wasn't working, the kids were fighting over a blanket ... oh my. We could not get to that beach house fast enough.

It was very cute, all the way there Nate kept saying, "I want to feel the sand between my toes!" And it's not like he has heard that saying before--he just really wanted to feel sand between his toes! So when we pulled in the driveway, we didn't even stop in the house--we went straight out to the beach. Nate was so excited to get his toes in the sand. He LOVED it. He immediately started throwing sand up in the air. Georgia helped him. So we did go inside and explore the house, which is right on the beach and is awesome, and I changed the kids into their swimsuits so they could play in the sand some more. They ran off like wild children and didn't want to come back inside.

The next morning, we headed back out to the beach first thing.

 

My Nate is a BEACH BOY! He just loved the sand and the waves. He was seriously happier than ever being at the beach. He would dig in the sand for hours, and he could have just stood in the waves up to his knees for hours on end if someone would have stayed with him.

Georgia ... not so much. There were a few times that she didn't want me to put her down because, unlike Nate, she did not like the feel of sand on her feet. I think her favorite part of the vacation was this little princess chair Granna and Pop brought her. :)

This beach had HUNDREDS of jellyfish. They were everywhere. The first night we were there, a neighbor told us that the clear ones wouldn't sting. Then after some wikipedia searches we discovered that all the ones washed up on the beach with no tentacles were safe to handle. So Cade began a collection of jellyfish. There was talk of bringing them home. He wanted everyone to touch them. I refused. He talked Nate into it.

I caught a rainbow--how pretty.

Jellyfish. Cade talked me into going out in the water with him once, and we were out about waist high. Something stung me, and at the time I thought it was a jellyfish, but someone mentioned it might have been a stingray--Ick!!!

We were hanging out on the deck and I looked over and saw Nate in this super tall chair ... How did he get up there?

My brother flew in (good choice) and the rental car place offered him a convertible. So we all took turns driving it. :)

Georgia gets right up in Cade's face, nose to nose, to talk to him.

Now don't you wish you could look this cute in a bikini? I do!

As the week went on, you can see we were all wearing more and more clothing! I was trying so hard to not get sunburnt. Of course Blake and Georgia just got tan, but Nate and I got burnt. Especially me. And I was wearing a lot of clothes out there, covering as much skin as possible to avoid it.

At first, Georgia thought the sand was icky. This picture is so funny. She was just disgusted with all this dirt.

But she warmed up to it pretty quickly!

She and Granna built sand castles. Nate decided to big a deep hole, and he kept telling everyone he was digging to China.

We sat at the edge of the waves, and Georgia was holding on for dear life. With every wave, she would say, "Here comes a nudder one!"

 

My assessment of New Smyrna Beach: Besides a couple of good restaurants, there really wasn't much to do. But staying in a house right on this beach was amazing. We are used to Myrtle, where you can barely find a place on the sand to put your things. But check out these pictures. There was just no one, maybe a couple of families during the day, for as far as you could see.

A stark contrast to Daytona, where we visited one day! We just walked down the boardwalk.

Stopped in the arcade for Nate's favorite, air hockey.

Got some ice cream to cool us down.

And then played some mini golf.

By the first hole I figured it out: My kids are too young to play putt putt. Georgia kept chasing the balls and then putting them in the holes for us.

There were baby alligators there.

That night we went to this cool little restaurant with fresh seafood where you sit out on their deck and can watch the dolphins swim in the bay. Remember the story of Georgia losing her paci to a dolphin (not really)? This was right afterwards, when she was still in shock.

The next day we headed up to Orlando and were able to get together with some of my Spina Bifida mommy friends! I had already met Nicole at National Conference, but I only knew the other moms from online. It is so neat to know that practically anywhere I go, I have friends there. Thanks, Spina Bifida!

 

That afternoon we went to Sea World. That day was HOT.

 That morning my dad gave each of the kids a little money and told them to buy a souvenir at Sea World. So at one point during the evening we went in one of the shops and told them to pick one out. Nate found this seal/sea lion--we're still not sure which. He calls him "Seal the Sea Lion." This bothers Cade because it doesn't make any sense. Nate sleeps with Seal the Sea Lion every night, and asks to take him everywhere, like church.

 Georgia walked into the store and went immediately to the Barbie Shamu trainer, picked up the box, and carried it hugged to her chest all around the store.

At the end of the night we went to the Shamu Rock n Roll show. Nate was super excited. He loves concerts (on TV). Then the music started, and it was really loud. He started crying. Blake thought about taking him out of there. But I knew he would be sad later if he missed it. She he put his fingers in his ears and sat on my lap during the show. At one point I convinced him to take one finger out. :) He still talks about how awesome this was ... but that it was too loud.

Our last day, Friday, we just spent some more time on the beach ... Here's our bathing beauty getting her sunscreen.

 



Then that afternoon she fell asleep on me on the beach, and that's when my legs got really, really burned. Blake and I both tried to nap some in preparation for our long night, then he and I went out to dinner alone, which never happens here!

We left around 10pm, and Nate was zonked in no time, but Georgia fought sleep for hours. We averaged about one stop an hour for caffeine refills and bathroom breaks. At about our second stop, we looked up, and there were dozens of mosquitos on the ceiling of the van!!! Eek! We got to swatting as fast as we could. They must have gotten in the van when Blake was packing it. Nicole got eaten up by mosquitos, but nobody else seemed to.

So around 6:30 in the morning, we started getting really, really sleepy. We stopped and tried to nap a little in the van, but Blake couldn't sleep so he just downed some more caffeine and charged ahead. I couldn't keep my eyes open, but after about an hour of napping I was able to take over driving for awhile, and we made it home safely. The last couple of hours were pretty rough though, as everyone was waking up and cranky. Blake and I were wiped out for the next 24 hours, but Nicole and Cade went home and then went to the movies! :) They must have slept okay in the back seat. But we did have a day to recuperate and were ready to get back to work on Monday.

It really was a great time to get away from everything, spend time with the kids and our family, and have a lot of fun. But next time, we fly.