Monday, October 20, 2014

Saying Good-bye to North Carolina

When I first came to North Carolina I had a lot of worries: no "real" mountains or rock climbing or backpacking, about as far away from family as we could get while still being in the country, crazy hot and humid in the summer, didn't know anyone, etc. So much has changed within those three short years. Although no mountains appeared out of nowhere and I never went rock climbing, Keith and I found things that we really enjoyed doing: walking along the beach in the morning calm, walks and bike rides around Lake Johnson, the amazing farmer's market, uncountable waterfalls in the hills, and most of all some treasured friendships. In the end it was really hard to say good-bye. (Well except for the crazy humidity).
Last visit to the metabolic clinic.
One of the toughest good-byes (at least for me) was our last visit to Charlie's metabolic clinic. They have taken such good care of Charlie and us. Julie, Charlie's dietician, is wonderful beyond words. She was always available to answer questions, help when we had trouble getting formula, or had concerns and gave great advice about things we hadn't even thought of. Leaving to a new place away from them was hard. The one comforting things is that all of our dieticians we have ever had have been great. Personally I think that all potential dieticians have to go through some sort of "niceness" test. So I am not too worried about who our new dietician will be, but it is always, always, hard to say good-bye to people that are so much more than a doctor to you.

On a similar note (although unfortunately I do not have a picture) I almost cried saying good-bye to Dr. Radtke who has been my neurologist through out my entire seizure ordeal. I was walking out of the room where we had been visiting when I suddenly realized that this was the last time I would ever see him. I am kind of glad that I hadn't had that realization earlier because I don't know if I would have been able to make it through that appointment. He would answer emails that we would frantically send any day of the week asking what we should do now when some medication wasn't working or I was having major side effects, etc. After that final visit he gave me a hug and softly and lovingly whispered "I hope all goes well for you. You have been through a lot." The way he expressed it with genuine care almost brought me to tears.

All the people at Duke took such great care of me; Dr. Friedman my brain surgeon, Eve my midwife, Dr. Peters my neuro-oncologist, Dr. Radtke, and all of the many therapists and nurses that helped me along my difficult path. It made me feel sad and vulnerable to leave all of them behind.

Another thing we miss is the state farmer's market. It was like no other farmer's market I have ever seen; huge, open year long, the variety was amazing and fun local fare like okra, pickled everything (really, everything), etc. Not to mention the most beautiful and cheapest ceramic pots ever. You would have to see it to believe it. Unfortunately we don't live there anymore so I won't be able to show you.

"Our" Lake Johnson is another one. Oh how I miss that place! I took walks there almost everyday. It was my sanity keeper especially while I couldn't drive. Keith and I went boating there on a couple dates. Charlie played there and that is where Keith taught him to skip rocks on the water. It is the place where I felt the most "normal" after my surgery. It was relaxing and I always felt peaceful there. My thoughts were clearer, I felt more confidence in facing the day and my body felt stronger after walking/running there. But most of all I miss walking with my friends there. I miss the conversations we had and watching our kids play together. It was terribly hard to take that last walk around it, knowing that I would never do it again and that there would be nothing even comparable to it in Fargo.

Of course the friends we made were the hardest to leave. I couldn't say enough about our dear friends so I won't try, except to say that they were the jewels of our life there, as true friends always are.

Johannah, for instance, gave me the privilege of watching her son Jack who is the same age as Charlie. They quickly become great friends and it was truly a delight to watch them play together. I don't think Charlie understood what was happening when we said good-bye to them for the last time, but I did and it broke my heart to know that Charlie would never see his dear friend again.

Shortly before we left Johannah took me kayaking out on Lake Johnson. It was the freest I had ever felt since the seizures started. Seriously. I don't think she knows that gave me so much more than a ride in her kayak. It was the first time that I felt like my old self again; the self that at times I thought would never come back to me. After my ride I came back and picked up Charlie. He doesn't look like it in the picture, but he loved it. He peppered me with questions about the big pipe under the bridge and how the house on the pier stayed on the water.

The Fergusons and Flores' are also friends that we still miss very much. They had been my walking companions and as a result we became good friends. I know that Emily was the answer to the many prayers that I offered while in St. Louis and was scared of moving to yet another place where I knew no one. We met the first week we were there and quickly became very good friends. Our boys all became friends too as they played together on play dates and when we did babysitting swaps. While I took the picture on the right, Charlie said "I will miss you Thomas." Oh how it broke my heart! I don't know which was the more difficult: saying good-bye to our dear friends or knowing that we were taking Charlie away from his friends and he couldn't understand why or what was even happening.

These are just a few of the people we miss and were dear friends that we still think about and miss. Looking back I realize that the list goes on and on. One of the blessings of the seizures that I see in hindsight, is that it brought me in contact with many more people than I would have reached out to without being in that situation.

During this time, and before we left North Carolina for good we "house sat" for Keith's adviser and her family as they spent a month in Morocco where her husband is from. They have an extensive garden and Charlie was my big helper (and at times my not so big helper) in taking care of it.

When we weren't working Charlie would cool off in the wading pool or go inside to build long train tracks that wound their way under chairs and around table legs. That third picture I just had to throw in somewhere because I love how intently lobster Charlie is examining his pizza.

Boxing up the apartment and then a celebratory lunch (and lemon) before beginning the cleaning.
And then whoosh! We packed up and were headed off on to the next chapter in our lives and new adventures!

Sunday, August 31, 2014

PhD: check!

WE DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The day we have been anticipating for the last 3 years (or more) has come and gone! Keith passed his dissertation defense without any strings attached. The presentation part was open to the public so I went. It was really hard for me to stay in my seat and clap politely instead of whooping and hollering. After that everyone except for his committe members left and he spent the next three hours answering any questions they thought he should know the answer to. Then he called to say he had passed without any "as long as you fix this on your dissertation" attached to it.
I am sooooooo very excited to be able to spend more time together as a family and as a couple. For the last few months the norm was Keith got home from work, greeted us briefly, went to work in the office, came out for dinner and usually would play with the kids for awhile before we got them ready for bed. After which he went back to working in the office until some where between 1 or 3am. That was not everyday, but that is how it went most days. So can you see why I am so thrilled that we are done?

Keith with his committee. I am not going to try to give the names of they three other guys in the picture, but the lovely lady in green is his wonderful adviser who has been a gem with all that has been thrown at us. His whole committee has been. [Keith's addition. From left to right: Paul Murphy, Keith (obviously), Ross Whetten, Gina Brown-Guedira, and Spencer Muse]
To celebrate we went out to dinner with my mom (who came into town a few days earlier for the soul purpose to fly back with me and the kids to prevent major seizures again). It still seems a bit surreal. I am in Washington now with my family and will go visit Keith's parents after that and then fly to Fargo ND. Keith is taking a road trip with his brother Shawn and will get to Fargo in about a week. It is crazy how after planning so long for something it happens in what seems like a blink of an eye. So here we go!

P.S. I know we have said this before, but it can't really be said enough; we would not be here with out all the friends and family who helped us. We truly would not have done this by this time without all the prayers, fasting, visits by family, friends and ward members who helped me when I needed it most and allowed Keith to go to work with the peace of mind that I would be okay. For all the meals, babysitting, calls, texts, offers to help, and support in general, we thank you. Most of all, I thank Heavenly Father for sending his angels, on earth and in heaven, when we needed them.

Wednesday, June 25, 2014

Charlie Says/Does the Darndest Things

This kid cracks me up with some of the stuff he says. Here is a short list of some of the good ones. (Sorry if you have heard some of these already).

-Keith went into get him up one morning and Charlie said "I hear the magical sound of things out there! It's amazing!" (He was referring to this song. In case you were wondering.)

-At dinner he sang to each of his green beans the same song as above.

-During family prayer, one night, he reached over and folded Jane's hands. Then holding them in one hand he reached over to Keith and held his hand in the other.

-Hearing Jane cry in the other room he said: "she just needed to fuss about it."

-Charlie: "I kind of have some problems going on."
Me: "What kind of problems?"
Charlie: "Well that storm last night woke me up."

-"Don't forget... I'm special."

-Upon stepping out of the airport in Fargo he sadly said: "My face is cold."

-During breakfast:
Charlie: "My mouth is full."
Me: "Yep."
Charlie: "And your mouth is full."
Me: "Uh huh."
Charlie: "So me and you can't talk."
M: (Post swallowing) "That's right."
Charlie: "Mommy?"
Me: "Yes Charlie?"
Charlie: "Don't talk!!!"

-During dinner:
"Mommy! Your burrito is a steam roller! But you can eat it if you want because it is made out of food."

-In the car:
Charlie: "Mommy! I shared my booger with Baby Jane!"
Me: "What!?! Is it on her finger?"
Charlie: "No. She ate it."

-Charlie: "We should demolish our house."
Me: "Why?"
Charlie: "Because we don't need it anymore."
Me: "Where would we live?"
Charlie: "In a new house. With a backyard."

-Charlie: "I am kind of having a rough day."
Me: "Why?"
Charlie: "I have been eating a lot of food."

-Me: "I love you Charlie Boy."
Charlie: "I love you Mommy Boy."

Wednesday, May 14, 2014

6 Months!


This little darling is 6 months old! (well really 7 now, but who's counting...) Time really does fly when you're having fun and are really busy. We love her to pieces and are so grateful that she was sent to us!

Here is a little bit about what she is up to now...

She is sitting up! Which she thinks is just about the best thing ever. She used to love being on her back but not now! She hates it when she tips over.

The exception to the rule is if she falls down on the grass. She loves that! Although she still doesn't like it if we put her on her tummy, she is okay with it if she tips over and ends up on her tummy by herself. The result is that she gets a lot more tummy time than before and is getting quite good at it.

This is how we found her when we had sat her up on the floor and then got busy getting Charlie's lunch ready after church.
One of the benefits to being the second child is that she sleeps through almost anything.

She absolutely loves her tongue. She sticks it out and plays with it all the time. Another thing she does with her mouth is chew. On everything. As I write this she is next to me chewing on the table.

She also loves to smile and laugh, and the one who makes her laugh most is her older brother. She loves to watch him from the moment he enters the room. He recognizes her attention so he hams it up for her. He's usually pretty good with her but gets a bit rough at times. We have been trying to explain that he can't rough house with her, but he doesn't seem to really get the concept or the fact that he can't carry her around by himself.

Despite all that she loves him and Charlie says that Jane is his "best friend."

At times it gets a bit crazy having two kids (I know, all of you with three or more kids are thinking "you have no idea") but we are so happy and wouldn't change it for the world.

Tuesday, April 22, 2014

One Year

Today (Earth Day, of all days) marks one year from that first Grand-Mal seizure and the diagnosis of the tumor. Although we still have struggles we have come a long way since then. So today we celebrate not the first seizure, but all the progress since then and the many angels (on earth and in Heaven) that have aided us this year; the hardest year of my life.

I am so grateful for Keith who always made me feel like we were in this together. He gave me a shoulder to cry on every time I needed it (which was a lot). I am thankful for my two wonderful children who gave me a reason to keep going. Especially for Charlie who, although he was scared each time I had a seizure, would hold my hand during it and was always helpful and caring after it.

I also want to thank my extended family who supported me by long visits when I needed them most and gave their support and encouragement. Also, thanks to my many wonderful doctors who gave me wonderful care all along the way and those who are still caring for me. My ward was great with arranging play-dates, bringing meals, offering rides and just encouraging me. I have dear friends that have come and stayed with me, taken me to get pedicures (quite the treat), driven me places, sent sweet cards and letters and gave me the best birthday week ever.

I also thank my Heavenly Father who sent me little blessing when I needed them, to show me He cared. For instance, when I came home from the hospital and was really discouraged and overwhelmed at the diagnosis, I saw three new birds come to my feeder in less than a week. It is really strange that in such a short time three new birds would visit my feeder after having it up for two years. I haven't seen them anywhere else since then. That may not seem like a big deal to most, but to me it was a tender mercy showing that He was aware of what I was facing and He loves me personally. I am really overwhelmed with gratitude for all the love that has been shown to me.

This past year I have gone from having an average of 16 seizures every day to now one every week or so. That is a huge relief and serious progress. This past year I have had eight Gran-Mal seizures, one sweet baby, several MRIs, tried four different anti-covulsant medications (without much success) and one brain surgery. That is a lot for one year and I desperately hope that it will never be repeated.

Here's to a better year and a brighter future.

Monday, April 14, 2014

If I Can't Control My Hair, How Can I Control My Life?

Right after a bath it is looking pretty cute and nice. (Pictured here with cousin Grant who is only a week older than her and doesn't have her same hair issues.) A post about that delightful visit is hopefully coming soon... Anyway, back to the hair.

She is pretty excited about it too.

It slowly but steadily gets crazier from there.

We try a bow now and again as a desperate attempt to improve it a bit. Does it work?

Don't answer that.



Even though her hair is a bit (or a lot) unmanageable, she is still a cutie.

Thursday, March 20, 2014

Playing Catch-Up

A ton has happened since I last blogged. So I am going to just give a summary. There are a lot of pictures. Here we go...
The 3-generation pixie cut picture and Charlie helping Ama sing to Jane.
My mom stayed with us for two months while I recovered from surgery and tried to figure out the whole seizure thing. I am still having them but hopefully this new med will do the trick. Hopefully?

It snowed!

Mom helped Charlie (or is it the other way around?) build a snowman right outside our window so he could watch it get small, small, small.
Mom went home. :(

We did a little bit of yoga and went on few walks.

Aunt Liz and Ben came!

I love the picture on the left. It looks like they are deep in conversation.
So Jane got to meet her cousin Ben for the first time.

Ben likes to put his mouth on every cup or water bottle that his mommy does.
Charlie shared his cars and trucks with Ben, which means love.

Jane discovered her feet, which I think is super cute.

Charlie got a big boy bed (we just took one of the sides off his crib until we move the big bed that our multitude of guests have been sleeping on into his room), and is potty training! He can now keep his pants dry all day but has yet to poop in the potty. We have tried a lot of things but any advice is welcomed.

Charlie learned the hard way that you shouldn't run with your hands in your pockets.

Charlie also parked his cars on the piano (which he has done for quite some time I just have never been sneaky enough to get a picture of it), discovered basket ball (the hoops are high), and "helped" me make pie for pi-day (okay, so that picture is more recent, I just wanted to put it in).

Charlie did tummy time with Jane, Jane is learning to sit up (which she is very excited about until she does a face plant), and Jane discovered rain.

Keith got a few job offers and after narrowing it down to two (Fargo, ND and Kinston, NC) the company in Fargo flew us all out to check out the area. Charlie's first words after exiting the small airport in Fargo were "My face is cold." Yep, cold (very, very cold), windy, flat, with very few trees. Also has great people, good schools, and stores that carry a lot of Charlie's low-pro foods. But did I mention that it is cold and flat?

So we went back home and Keith accepted the job in Kinston, NC. But as soon as he did we both felt unsure about the decision. I just kept on thinking about it being incredibly cold in North Dakota.
Keith, who had a field site in Kinston, suggested that we take a drive there to see the area. So we did, and it was sad and scary. There were these big southern houses that were abandoned and falling apart. Crime was high and schools were terrible.

We did stop at a bar-b-que place that had very southern food. I got collards, fried okra (classic southern food) and carolina bar-b-que (of course). They also advertised fried chicken livers and fried chicken gizzards. I passed on those.

Then we hit Winterville which is a very small community outside of Greenville that was very nice. We kept on thinking of ways we could make living there work (the stores didn't carry any of Charlie's food so we could make trips to Raleigh once a month, etc). I realized on the drive back that if I lived in Winterville I would never want to venture outside of it due to how terrible the rest of the area is.
I reminded myself again of how cold it gets in Fargo and so when we picked Charlie up from our friends place we told them that we were pretty sure we were sticking with North Carolina.

That night, after the kids were asleep, Keith and I sat on the couch and thought things over. In the end we came to the conclusion that we should move to Fargo. Immediately we felt at peace. So Fargo here we come! (In September). Keith and I made a deal that every January/February, when I start going stir crazy I can fly to some place warmer.

Which isn't hard to do when the high with windchill is sometimes below -30 degrees Fahrenheit.