Messy

Sorry for the utter confusion I possibly caused by the last post.

Things around here have been messy. There have been tastes of bitter and sweet. Things have been interesting emotionally and physically. I think the dishes have been done twice all week. I have had to let go of one nurse, interviewed a replacement...and she was our first no-show for her shift. So I told them to not send her again. Interviewed another. Decided to give her a chance, she is working out okay...however, is afraid of dogs. This could totally be an issue in the future, but she says she'll "try it out". Hopefully she can get used to the idea by Nov, I just need a qualified person at this point! Our main nurse has decided she doesn't want to work on Sunday...who does? That is the only day that I absolutely need someone, because I am gone at church. Yep, on the first week free to go to church all three hours, what do they do? Make me the Gospel Doctrine teacher! If that doesn't make you laugh, I don't know what will. Following someone who used to literally write Music and The Spoken Word. No pressure! Back to this week...then the weekend nurse quit because she doesn't want to drive an hour each way for a 5 hour shift. Can't say that I blame her...but still, I actually liked her! She can't do the day shifts because she is pregnant and will be on maternity leave right when Cole starts school. Had someone call and cancel an evening respite shift, the morning before, that I have been planning since nursing even started...scrambled and replacement #2 did some pinch hitting. SO-I am hopefully moving forward with replacement #2 for Tues, Thurs. In the middle of striking a deal with the M, W, F nurse for every other Sun, she puts in her two week notice and says that she can no longer work with Cole. AHHH! We really liked her and I seriously thought we were going to have her for years. Cole wakes up every morning asking specifically for her. So, having new Tues, Thurs take the other Sun and maybe just the whole she-bang. She has said she is available M-F. So, now just need someone to do Fri night and Sat and the other Sunday, right? Doubt it will be that easy. THEN, the agency now says that they can't have the nurse take the dog to school. Say what? I told them in the very beginning that this is what was going to happen. It's three hours, with a highly trained, very obedient, very useful dog! I promise that it will make their job even easier, not harder. We'll see what happens. I am grateful that I have this problem. It has just all hit at once. It's making me wonder if it is worth it...someone remind me that it is!

On a high note, we had our first double date in a year and a half last weekend. It included lovely company, good food and some spontaneous bowling (in dresses)! Saw Julia Child's kitchen, what a special moment for me, and the original Star Spangled Banner. Went to Relief Society and got to eat free food, always a pleasure. Took Cole on an outside play date and he survived! Met another 4 Paws family that lives in our area and is also going to be in our class in October! I also got to turn in my 30th birthday present that Brian bought before we actually moved here and we realized that cost of living is not just double, but triple what we're used to. Que sera sera. We still went, saw Mr Groban and it was awesome. Also got to indulge in my new favorite right before, Chop't. Seriously, I have thought about it every day. It's probably a good thing that the closest one is 40 minutes away. I am already addicted. The Cobb and Steakhouse salads are practically life changing...and don't get me started on the local cream soda! I'm hungry...next stop, Cafe Rio! They have a brand-spanking new one within comfortable driving distance! It is a scientific wonder that I weigh what I do right now. I am prone to eating the most fat-filled delicious foods, just small portions before the nausea kicks in. Where is the girl that could polish off an entire burrito enchilada-style by herself? I cleansed last week, but still not up to full eating capacity. I don't care that I have not weighed this much since I was 18...I just want to eat and have my clothes fit! Neither are really happening on a regular basis right now. Thanks gallbladder...you are awesome, not really.

I'm seriously contemplating returning to work part time. This is a whole 'nother ball of wax that I just can't ramble about yet, because it would likely be incoherent. Just take my word for it when I say it has been a struggle. A lot of back and forth with the Public Health nurse and the doctor trying to prepare for the Medical Review Board. Knock on wood, cross your fingers and every thing else that it turns out okay.

Same stuff just different packaging. Complicated and messy as ever. We are never vanilla. More like those crazy ice creams that have 8 different flavors in one. Rhubarb and Lime Cardamom frozen yogurt sounds insane, right? Sometimes though, it is the unique combination of flavors that makes something surprisingly sweet. Sticky, messy...but sweet. Just like our life and our little boy.

Sole

It's no secret that I love shoes. Funny, since I hate wearing them unless I am going somewhere important. You will always find me barefoot in the house. What does that say about me? I'm not sure I want to know! :)

These are my favorite. Black Reef flip flops, or slippers as we call them in Hawaii. Classic, simple, no-frills. No bows, buckles, bold colors, just two thin pieces of fabric in between my toes. Comfortable. Completely molded to my feet. Can go with anything from jeans to a skirt. I'm not even sure how old this particular pair is. I just continue to replace them when they wear out. Tried and true. The go-to shoe. I could pick one pair of the many beautiful shoes I have, most of which my husband has gifted me with, but you will find these on my feet the majority of the time. I remember once when I was home from college for Christmas break, I was wearing these in the snow. My father slipped me a $20 bill with the admonition, "Go buy yourself some shoes". I had other pairs, I just wanted to wear these. They were familiar.

I wish that everything was so simple. I know exactly which shoes I am going to put on if I need something comfortable. If I am going to get the mail. If I am going to the pool. You can't really ruin them. If they get dirty, just run them under some water and they are good to go again. Sometimes in life I wish that you could just wash away all of the dirt and reveal a nice sturdy foundation. Something that feels good and doesn't take a lot of work. I know them and they know me. We are sole mates (pun totally intended). It is nice to not add another thing to the list when it seems "The List" just never gets shorter...only things added.

Why can't decisions be as easy as going for your favorite pair of shoes?

You Can't Please Everyone

The Parable of the Old Man, The Boy, and The Donkey

There was an old man, a boy and a donkey. They were going to town and the boy was riding the donkey, with the old man walking alongside.

As they rambled along, they passed some old women sitting in the shade. One of the women called out, ''Shame on you, a great lump of a boy, riding while your old father is walking."

The man and boy decided that maybe the critics were right so they changed positions.

Later they ambled by a group of mothers watching their young children play by the river. One cried out in protest, "How could you make your little boy walk in the hot sun while you ride!"

The two travellers decided that maybe they both should walk.

Next they met some young men out for a stroll.

"How stupid you are to walk when you have a perfectly good donkey to ride!" one yelled derisively. So both father and son clambered onto the donkey, deciding they both should ride.

They were soon settled and underway again. They next encountered some children who were on their way home from school.

One girl shouted, "How mean to put such a load on a poor little animal."

The old man and the boy saw no alternative. Maybe the critics were right. So they decided to carry the donkey.

As they crossed a bridge, they lost their grip on the confused animal and he fell to his death in the river.

And the moral, of course, is that if you try to please everyone you will never know what to do, it will be hard to get anywhere, you will please no one, not even yourself, and you will probably lose your ass (donkey).
_______________________________________________________________
This is one of my favorite parables. I used to try and be such a people pleaser. I followed all of the rules, tried to make others like me, do what I thought that they would want. In the end, I have realized that no matter what I do, how I do it or when I do it...someone, somewhere is going to have a different opinion.

and that's okay, because I probably have an opinion about what they are doing too; I just keep it to myself :)

Who'd Of Thunk It?

This time last year....
We had just barely gotten rid of the drop seizures. Were cautiously going without the helmet. Full fledged on keto. Finally had an oxygen concentrator in the house. Were seeing an increase in overstimulation issues. Only using Versed, Diastat wasn't working. Were still on house arrest. Lived in the west. Still didn't have official Dravet diagnosis.

Now...
Have a g tube. Not on keto. Have not only oxygen, but two pulse oximeters. Have 5 rescue meds we are rotating. Dravet. Have nurses. Free from prison. East coast dwellers.

Yesterday Cole swam in a chlorine pool, outside. Went to a restaurant. Then met up with some Dravet friends at IKEA...all in the same day, and without a nap. Normally, just one of those things would have been considered super risky and would have most likely caused a tonic-clonic seizure and a day of recovery. Today? He's fine and dandy. Slept for 13 hours because he had too much fun, but up and bright as a light bulb!

Mind you, he wasn't totally cooperative during his swimming lesson. Climbing in and out of the pool. He was also terrorizing the restaurant. Trying to use the carpet sweepers to "clean", running to the waitress station and trying to push the keypad. Wanting a credit card so he could slide it through the designated slot. Laying on the filthy floor instead of eating. A nice person who was staring at us the entire time, stopped by and told me that she thought he was adorable and that her son used to act just like him. She told me how that son is now in a Level 4 Gifted and Talented Program, so it meant good things that Cole was so "busy". Hmmm....didn't want to hurt her feelings, but we know better. He ran around IKEA like he was being chased, knocked over a few displays and got into a little trouble with a suitcase. Still, he did it. We did it.

The perfect place for an impromptu family reunion! Some were visiting from the southern part of the state and we couldn't miss the opportunity to see them.Who would have ever thought it was possible? I sure didn't this time last year.

Dravet.org

The IDEA-League has changed their name to dravet.org!

Still a wonderful community that we are grateful to be a part of, still up-to-date incredible information...just a different name.

One of these days I am going to get Cole's picture taken so that it can be on the website. They keep asking, and I keep getting busier! I need to update his story and update this site too. Falling on the priority list as other things come up, but hopefully eventually others who don't read Epilepsy Warriors can get hope and feel validation from reading about our little warrior.

Check out their new site. It is very user friendly and has great information about Dravet.

Review

Last week was stressful. Trying to orient nurses to our routines, Cole's seizure types and house rules is more difficult than you would think. It takes a trained eye and lots of practice to decipher what is a seizure, what needs intervention, what doesn't, etc. Then you have to add stuff like where the sippy cups are, which book Cole has to read before a nap, and how to use the 4 remotes for the television, DVR, DVD and playroom ancient TV. I know, we need a universal remote for everything in the house..would you like to buy us one? :) Seriously though, these things take time. On top of it my gallbladder has been reminding me that it really needs to be removed. Haven't cleansed for a while...need to add that to the list. Who likes to schedule time for throwing up though? Even if it does make you feel better in the end! I don't have time for surgery, so it has to be sometime soon. Really people, TMI..I know.

I have also been working on the Medical Review Board for school and had to create or help draft a lot of explanatory documents. One of them is from the doctor, and it was based on this list.
_____________________________________
I need you to express in this letter that Cole is a complicated patient. He has been diagnosed with an SCN1A mutation, and has symptoms consistent with Dravet Syndrome, so that is his main diagnosis. He has other needs that are taken care of by specialists, but we consider his neurological symptoms and all things directly related to his genetic mutation his primary disability. It takes a lot of time to get to know him and all of his various triggers. He has 7 identified types of seizures. Tonic, absence, tonic-clonic, myolconic, atypical absence, atonic, complex partial. To understand what type of seizure Cole is having and if it needs intervention, takes a trained eye and detailed observation over a long period of time.
-It is not certain just how much Cole understands or loses pre, during, and post seizure. He has had to re-learn skills in the past and others with Dravet have been known to lose skills completely. He will require a lot of repetition and patience and we are not sure exactly how much he captures in between his brain "turning on and off".
-He needs constant, 1:1 vigilant supervision to ensure his safety. He is at risk for falls and needs to be constantly assessed and monitored for seizure activity.
-He has no sense of danger and will put himself into situations frequently where he could be hurt. He will run into the street, jump into a body of water, can unlock and open doors, will immediately accept strangers, etc. He will need someone to intervene when he has compromised his safety and remove him from the situation.
-His oxygen has been known to drop very quickly and he needs to be assessed continuously with a pulse oximeter during major seizures and needs O2 support to avoid hypoxia. He must have an oxygen tank available at all times.
-Attending to him during seizures is a skilled need. His rescue medications have lost efficacy previously, so we have to rotate them on a periodic basis. What works for one seizure, will not always work for the next. It takes someone with medical training to be able to assess when to use them, how much to use and which drug to use. Someone who works with Cole on a daily basis would have this knowledge. He receives rescue medication through 4 different routes (rectal suppository, oral, intranasal, via g tube) to understand the procedures attached to which route is appropriate at what time is also a skilled need.
-He has a g-tube which he uses daily. He also can receive some rescue medications through this, so it requires monitoring and assessment. He also needs to have supplies available such as syringes, extensions, pill crusher, medicine cups and water for his g tube.
-Cole has sensory issues and will get overstimulated easily. Excitement, noise, patterns, textures, light, temperature and other things are triggers for his seizures.
-His overstimulation issues need to be considered during transportation. He does not do well when traveling, so the least amount of time on the bus would be preferred. Passing cars, light coming through the window, shadows from trees, all of these things can be triggers for seizures. We have tinted windows and he wears his FL 41 lenses when we are in the car. He also needs adequate heating and air conditioning as he cannot regulate his body temperature appropriately.
-He has special dietary needs.
-Cole has many features of dysautonomia including photosensitvity, temperature sensitivity, elevated heart rate and occasionally excessive thirst. All of these need to be constantly monitored and need intervention with special equipment such as Fl-41 lenses, a cooling vest, thermometer and a heart rate monitor located on his pulse oximeter.
-Cole will most likely need nursing for the rest of his life. Dravet is never going to go away and he will continue to need to be assessed and monitored for seizures, even if he looks like he is doing well on the outside.
-Dravet by nature is always changing and things rarely remain stable for Cole. There is constant adjusting of medications. New seizure types, new triggers, etc. Even though Cole presents as a happy, talkative child he still requires a lot of care and things can change in an instant. He could have a major seizure at anytime, so he is always at risk for losing skills, brain damage, or even death.
-Cole is often immunocompromised and will become ill when others do not. He will miss a lot of school due to illness, so it is important that he has as much opportunity as possible to attend.
-Cole struggles with new people and new places. It overstimulates his brain and it is a trigger for seizures, so to have the chance to have people that he is familiar with in an unfamiliar environment will be helpful for his overstimulation issues and can bring him comfort. Someone who is familiar with him will also be able to know when to remove him from a situation of overstimulation, to allow his nervous system to recover and prevent seizures. This continuum of care will provide Cole and his parents comfort and perpetual feedback on his condition.
___________________________________________________
Heavy to see it all written out like that...and that's just the stuff that needs consideration for school.

However, some really great things happened in the midst of multiple reality checks and bouts of nausea.
*Brian and I went to dinner. By OURSELVES, without having to arrange for someone, teach them every thing and then worry about it all night. It was lovely, except for the whole I-felt-like-I-was-going-to-puke-the-entire-time thing, really...it was lovely besides that. We were going to try for a movie also, but I wasn't up for it. We calculated that it has been a year and a half since we have done dinner & a movie. Before that time, it was a year. Yikes! Having the weekends free if we want them has been kind of overwhelming. Date? What's a date? I guess we're going to find out ;)
*Took Cole swimming 3 times. He did awesome.
*Still no major tonic-clonics! Huh? Grateful...but huh?
*I went to a fabulous girl's only pajama party. It was spectacular, including the atmosphere and company.

So, in the midst of all of the crazy new there has also been good new...and some of the same old, same old.

We are a circus. Never boring.

Genetics

Cole has a whole lot more than missense mutations being passed down.

The look on my brother's face kind of says, "Feel bad for me."

Don't let it fool you, he's just as weird as the rest of us.

Thick hair, blue eyes, bad teeth, big hearts and loud personalities.

Some things just can't be defined by nucleotides.

I love these people!

Emotional Eating

I had Oreos for lunch.

After the meeting with the Public Health Nurses today where they made me not-so-sure that I would be able to get my private duty nurses in school after all, Cole waking up 5 times last night, the oxygen company sending me the wrong sensors again, and writing over $600 in checks for medical bills...I'm a little frazzled today. Then Cole threw up all over me because he was running with food in his mouth. Yuck.

So to help me refocus I made chicken noodle soup for dinner :)
*You know who you are...I can't feed you anymore! Can you come to my house? That would be much appreciated, thanks.*

I'm considering going and picking this up for an after-dinner snack.

In the next life, I am going to live in a world where it is totally okay to have dessert multiple times a day.

Here's to tomorrow! lol :)

IEP Warrior

Imagine an army coming through the gates. Returning home after a long, tiring stint at war. Some battles were lost, but others were won. The soldiers are crying "Victory! Victory!" as they run into the arms of their loved ones, celebrating with family, friends and even strangers. The war is still happening, but major advancements have been made and the end is in sight.

This is kind of how I feel.

I have been doing the work of an entire army (or at least it feels like it) when it comes to getting Cole a solid education and therapies. I left the Special Needs Preschool building for the county last week wanting to grab anyone I could and just hug them, screaming, "I did it!". Fortunately for the unsuspecting strangers out there, no one was in the parking lot. So I just got in my car and drove home to pick up Cole and Brian so we could go to the pediatrician. Bummer.

The months and months (well, technically a year) of preparing to get Cole into pre-school and have a proper IEP has taken its toll on me. Emotionally and probably physically. I understand how important it is for him to get the right support at school to even give him a chance at a proper education. It is one of the main reasons that we made the move East.

I've got document after document. Letters, therapy notes, psychologist evals, medical records, and other mumbo jumbo that says my son needs a full time nurse, he needs special education, he needs this, he needs that. After all of the hullaballoo that we went through last time, this particular course of testing and meetings have made me go in with the utmost preparedness, ready to draw my guns and get them blazing in seconds if I came up against resistance. Last time I was prepared, but was not even given the chance to speak. I knew I could not be silenced again. Fortunately, I did not have to put up much of a fight this time around. I assembled enough information (or perhaps overwhelmed the committee with so much information) that they did not put up much dispute. Now, I didn't get everything that I wanted, but I was willing to take what I could get. It is leaps and bounds ahead of where we would have been if we had stayed where we were.

Cole will be going to pre-school 5 days a week, starting in September. He would have only had 2 or 3 days a week in UT (IF we could have gotten him in). He will be there for 3 hours a day, and have transportation by bus. The school is only 3 blocks away! There are considerations built in for his light and temperature sensitivities. His behavioral issues. Communication goals. Participation and attention goals. I am very pleased with the outcome. He'll have Physical Therapy and Occupational Therapy (not enough, and no Speech...but I'll take it). The entire meeting, the committee took my suggestions and changed the IEP accordingly.

HUGE battle won: he will be there with a full time nurse, devoted specifically to him and his needs. I still have to go to a Medical Review Board to get our private duty nurses that we have at home able to come to school with him, but the county nurse and the director said that I am more than prepared. They feel that the board will grant this to me for continuum of care. They were kind of surprised to find out that I had already learned about the battle that was going to have to take place and that I was ready for it. See, normally a kid who needs nursing at school has to have a nurse from an agency that has a contract with the district. The have only rarely let in nurses from another agency. Otherwise, the school has to pay Medicaid for the hours, and a huge billing mess ensues. So, I see their point. However, my child is not cut and dried. I need him to be with nurses for an entire day that are familiar with him and all of his seizure types. All of his different rescue meds, which ones to give for which type of seizure. When to give them. To have one nurse for a couple of hours, then go to school for 3 hours with another nurse, who I can't really talk to (because they would be employed by the school), and then come back to another...just wouldn't work. So, HUGE victory on the horizon for me with nursing. Remember this? You might understand why I wanted to hug complete strangers. I was so complimentary to all of the committee members. I let them know that I have been around the block so I could compare..and they did an awesome job!

Another huge battle: The didn't even question the dog. Taking a service dog into school can prove to be a real challenge for a lot of people. When they heard how trained our new friend is going to be, they just put it into the IEP and moved on. I'm certain that this had something to do with it. Thank goodness for pioneers! We won't have those issues, since there will always be a nurse there to act as a handler and 4 Paws provides all of the proper certifications. Still, I'm sure it had something to do with the immediate acceptance that we were going to bring a service dog into school. We'll have to wait and see how it really goes in November, but I got a flat out, "No" last time.

There is more fighting ahead, more battles to be won...but the opposition is not as vicious this time around. My heart carries many battle scars, but it is very full today knowing that I have done something to help better Cole's life.

Break Up

Dear 'Tah,

This last week was the final nail in the coffin. I'm not coming back.

I will miss your mountains, your red rocks. I will miss oh so much about you! We really had a good time together.

But, I just can't walk away from full time nursing, Medicaid and wonderful opportunities for special education.

I went to the pharmacy this week and paid, get this, nothing for 3 prescriptions. You can understand, right?

I still want to be friends. I'll still visit and occasionally write.

However, I will not be a permanent resident of your fine soil as long as my son is alive.

I know, I know, I promised I would come back in 10 years but things changed. People change.

It's too bad, Utah...because I really like you (maybe even love you), but it's just not going to work out between us.

This time, I can really say it IS you, not me.

Sincerest Regards (and a little regret),
NIK

Home Of The Brave

We have now been on the new med for over a week.

What I have noticed in the days I have been able to observe:
-The myoclonics have been reduced.
-The morning is still hard. He's struggling to wake up and has a lot of myoclonic activity.
-Cole is back to sleeping more, which he always does with the intro of a new med. He's averaging 12 hours and 2 hour naps, with waking 1 or 2 times in the night. It doesn't help that he has a summer cold (official diagnosis from the doc), which is causing him to sniff all the time and be congested.

It seems that we have kept the overstimulation tolerance with the decreased Depakote. We took him on the metro for the first time to go and see fireworks on the mall. I must admit, I have high expectations when it comes to celebrating the 4th. I come from party people and a small town that goes all out. BUT, if I have to miss the celebration in my hometown, seeing Josh Groban for free in my new hometown is quite pleasant, thank you :) It took a lot of guts because we knew that there was going to be lots of people, noise, etc. We pre-loaded Cole with Valium and he did great! The way back home was more crowded than I have ever seen the metro, it reminded me of Hong Kong when everyone is going home from work. Just tuck your elbows in and hold on for dear life! Luckily, we found a little corner and Cole just acted oblivious to the chaos. Thank you, Valium!After multiple discussions, we decided to try Topamax instead of Clobazam because they have similar properties and we could get it immediately. So far, so good I guess. We are still going to start the paperwork to get Clobazam, but it is taking 10-15 days to get it into the country. SO, we'll just have it as a back up in case the Topamax doesn't work out. This being said, I think we are going to stick to this med for at least a month...he is only on a very small dose and it seems to be making a difference.Speaking of bravery, this week has had so many "firsts". Besides going on the metro and celebrating the 4th somewhere besides ID or UT, we started our nursing shifts! This has been such a great, weird, fun, stressful, tiring, wonderful, sad thing. I know...lots of emotions; but, it's the truth! Having to find someone that is qualified and then basically give them full trust in the very beginning of a relationship and counting on them to keep your child alive is strange. It takes bravery. It's also uncomfortable at times to realize that someone who is practically a stranger is sitting, awake in the next room while you sleep. Uncomfortable, yet comforting...so ironic. So we have had our first night nurse, our first day nurse and I've tried to map out a schedule. The list of things that I want to do in the next couple of weeks don't even really include fun stuff, it's totally boring things like organizing the pantry and cleaning the storage room! We'll be sure to throw in some fun stuff too :) It has been the first time that I can be in the house, but not have my eyes on Cole at all times. Weird, but a burden lifted.

Having to put the pulse oximeter on Cole every single night and sleep in a bed with me, without Cole, has also brought all of these emotions that I mentioned out in Brian. It's just another reminder that things are different. Truly though, we have entered another season in our life. We went to the grocery store together, without Cole, last night for the first time in years. It was strange, but enjoyable. We weren't racing through trying to get things done as fast as possible, it was actually kind of pleasant! :) The whole situation is just going to take some time to get used to. All in all, the bravest one out of all of us is this guy. He's a warrior.

Road Trip

and I'm back...

Talk about a whirlwind tour! I just took a four hour nap trying to recover :) Hooray for the 4th of July!

Everything was picture perfect. Not a cloud in the sky and the most beautiful bride on earth.

One of my favorite parts of the entire weekend had nothing to do with parties. Well, except for the dance party that I was throwing in the car. I had the best time on the drive up to Idaho. There I was, for three hours, just singing my guts out, joining everyone from Neil Diamond to Keith Urban. If you really want a chuckle, think of me bouncing up and down on a country highway, music so loud that you could probably hear it from other cars, singing this all alone. I'm sure that the passing vehicles thought I was having emotional issues, or really needed to use the restroom.

In between getting down with my bad self, I just thoroughly enjoyed being in the car. I have forgotten that it can actually be pleasant to drive down an open road. No schedule, no constantly checking the mirror to see if Cole is seizing. I could turn up the music because it would not hurt his ears. No Incredibles or Nemo in the background :) No wondering where the nearest hospital was if we had an emergency. No searching for enough road to pull off on if we needed to call Life Flight. No constantly asking, "Are you okay?" and waiting for the conditioned response. I am usually an anxious mess when I drive with or without Cole in the car. This time there was no stopping or calling frequently to assess the situation. Just cruising down the road in a comfortable vehicle, enjoying the beautiful vistas.

There is something about the West. I was constantly finding myself just taking a deep breath on this drive and relishing the views. To me, nothing says home like planted fields intermingled with meadows full of sagebrush, mountains that are still snow capped in the distance and the flaming red of Indian paintbrush waving at you from the roadside. Miles and miles of open land without a house in sight.

I was kind of on auto-pilot having made this drive hundreds, maybe even thousands of times in my life. It gave me the space in my head to think, or to just enjoy belting out an 80's rock ballad. I miss having a sense of direction in my life, at home I always know when I am facing North. I can find my way around without relying on a GPS and don't have to hear a mechanical, female British accent filling the car with the word "re-calculating" because I have veered off course. In our new city, I am constantly lost and asking for directions, whether it be from Garmina (our GPS) or from a Higher Power. It felt so good to know exactly where I was and what I was doing for a few hours.

It is funny how its the little things that have become the biggest and most celebrated things in this new life of ours. Getting to be alone in a car for three hours, going to the church's 4th of July breakfast together, taking a bath, sharing ice cream and conversation with a cherished friend. These are our new victories. I don't think we'll be hitting the open road any time soon as a family, but we are on an incredible journey. Destination: unknown. We just have to remember to enjoy the view every once in a while.