Trip #2...

We just booked our second trip this morning. This is the trip that I am most excited about, and I am pretty stoked to share with you that we will be heading to NYC in the beginning of May. We will be staying in times square for a couple of days at Crown Plaza Hotel.

(Photo courtesy of: greenbiz.com)

This is what will be right outside our door.
(Photo courtesy of: hubsdesignmagazine.com)

(Photo courtesy of: photos4travel.com)

NYC has always been one of my favorite places in the world. I have been there several times as a child and teenager although I haven't been there in many years. I cannot wait to show the kids the brilliance and excitement of such a vibrant place. It should be a good time had by all.

Trip #1 ...

(Photo courtesy of: hotelchatter.com)

Our first trip is going to be to Chicago. We will be spending St. Patrick's Day weekend there, so the kids will be able to see the parade and the green river. We have booked a hotel on the outskirts of the city because the hotel that we had hoped to get into was already booked.

(Photo courtesy of: aviewoncities.com)

It should be a really fun weekend. We will be arriving in the city in the early afternoon on Friday, March 14th and will be staying there until Sunday evening. It will be a short trip, but a trip nonetheless, and I am excited to take the kids out and about. We plan on visiting the Shedd Aquarium and the Hancock Building as well as doing some shopping.

Photo courtesy of: aviewoncities.com

In light of our year of making memories Bob and I decided to invest in a good quality camera. We decided to purchase a Nikon D3100. Bob is the picture guru, so he did all of the leg work in deciding brand, etc...We didn't want to spend an arm and a leg on this camera, but also didn't want to go with the basic camera that we have always had. The camera is arriving on Wednesday. I am really excited to learn how to use it so that I can capture all of the memories that I can.

10,000 & Climbing

I remember once, in the very beginning of my blogging journey, that I had looked at a blogger and saw that she had 10,000 hits on her blog and thought, "Man, I hope to have that many hits one day." Well, that day has come.

I have been watching my blog count climb steadily day by day post by post, and it feels good to have reached a goal of mine.

Now, don't get me wrong - I know quite well that I am an extremely small fish in a HUGE pond. Some bloggers I follow regularly get 10,000 hits a month! Can you believe that??!!! I am sure that the best bloggers out there hit that goal daily and then some.

I have watched as my individual blog counts are slowly increasing and it appears that more and more people are coming to this space to connect to the words being written. If I had to guess, I would say that I know 99% of you (although I really have no way of knowing), but I do believe that there might be a couple of you out there whom I have absolutely no idea who you are.

I have always said that I do not write this blog for anyone, but myself and my children, and that is true. But what I have failed to mentioned is that this blog is one of the very few things that I have that allow me to be someone other than a mom or a wife. It allows me to be me as an individual. Here, in this sacred space, the person that you get to know is the person that I am when all of my masks come off. It is the me that I see when I look into the mirror and stare into my own blue eyes.

I feel very blessed to have people read my blog. There are so many out there that I am honored that you choose to take time out of your busy life to read my updates on Sarah or rant about something or just to share the days of my life with you.

It means a lot to me that there are those that can connect with parts of what I am saying. I know that the blogs I love the most are the blogs that inspire me in some way or where I can relate to the blogger in some way.

So, from the bottom of my heart, THANK YOU for helping me to reach a goal of mine without even knowing I had one in the first place. (Now time to make a new goal!)

Looking Up

Since we have decided to stay in our home we also have decided to be a little bit unconventional with it to make it more of our own. (I will be sharing pictures along the way, so that you all can take this journey with us. For those of you who have no idea what our home is comprised of - I will give you a before and after shot - I will also let you in on some long term plans as we finalize them.)

Bob had a really good point and noted that food and reading/ play based learning are taking up more and more of our time and seem to be the focus of our lives. Because of this we should make our home centered around those two things. We are going to take our living room and turn it into a dining room & creative play space. This will free up some space in our kitchen and allow us to possibly create a pantry area for the next year or so until we have both the time and money to gut our kitchen and really customize it to fit our needs. Upstairs in our biggest bedroom (and actually the biggest room in the house besides the living room) we are going to create another playroom and house the TV/computer in that space. The girls bedroom will be moved downstairs so that Sarah has easier access to the restroom for her nighttime bathroom needs. The location of the boys room and our bedroom are still to be determined. Because we are going to be traveling so much this year, we are going to make due with the furniture that we currently have and browse through thrift stores for the extra pieces that we need. I am excited about our new vision and look forward to implementing it.

I am also going to be turning our side yard into a big garden. I have received two seed catalogs in the mail and have just borrowed a couple of books from the library that will help me is creating the best garden possible. I cannot wait to share that with you as well. Hopefully, I have some fellow gardeners that read my blog because from what I understand gardening can be a bit difficult for the beginner.

I should have the details of our first trip in the next couple of days. Bob will be shoring up the hotel accommodations tomorrow. We are all super excited to be starting our new life of living with no regrets. Life is really beginning to look up.

Here are some scenes from our life lately:

This is what happens when Josh gets forced by his sisters to play with them.. Poor guy! On a side note he makes a pretty good DIVA.

I normally do not like playing in the snow, but in an effort to live my life with no regrets I promised myself I would do more things with the kids. All the while knowing that this meant doing some of the things that I don't normally like to do. Being wet and cold is definitely not one of my favorite things, but the kids asked me to play with them outside, so I did. They were so excited that I was willing to join them that being cold and wet was worth the discomfort just to see them smile.

Winter time fun.

Playing in the snow with the kiddos. 

Too cool for school.

Even Lily joined in the fun.

We did not eat any yellow snow. (At least I don't think we did.)

I found Sarah working on this sign the other day. I thought it was pretty cool. Just goes to show that having hope is on her mind even when I don't think it is.

Made by Sarah.

The beauty of homeschooling is that when most other kids are in school we can be out and about in the world having some fun. This hill is normally packed with people on snowy days. There was not a soul in sight yesterday when we decided to get out and enjoy some winter air. 

This is the type of day that I love the best. I love being outside with the kids. Taking in the sights and sounds of the world around us. I love letting them explore and taking in the world as they see it. If Bob didn't have to get to work I do believe we would have stayed even longer on the trails than we did. The kids had a blast playing outside, and it is nice to remember that even when it is cold outside there is no place better to be than in nature. 

Making the long walk up the hill.

At the top...

Having a race to see who could get down first. Lily is running down the hill with the kids barking at them like a lunatic. 

And the winner was: Andy!

Contemplating the next run down the hill.

Having fun.

Me and my girls. 

Exploring a frozen (sort of) river.

Playing on the ice.

More exploring...

Decisions Made

A woman contacted me through Facebook the other day wanting to know a bit more about Sarah's story. Before I shared any of it with her I asked her what her experience was with NMO. She told me that she worked for the Guthy-Jackson Charitable Foundation, and that her 9 year old son died from complications of NMO after a 5 year battle with the disease. (So, there goes my theory that the 32% of people who die from this disease are elderly.) Not being 'friends' with her on Facebook I tried my best to check out her story, and found myself in tears looking at her Facebook pictures. Her life story showed her family as it progressed through this disease, and how devastating it can be. I am so scared that this will be Sarah's fate. I am scared that the pain around her ribs is something other than her bed being uncomfortable and that it is the beginning of a downward spiral of respiratory failure. I am afraid that her continued multiple nighttime bathroom breaks are the beginning signs of bladder problems that are common in NMO patients. I just have a bad feeling about this whole disease. A bad horrible feeling that is sitting in my gut. I am scared to death that my days are numbered with her. I know that is terrible to say, and I hate even writing those words down, but this is my reality right now. I have learned to trust my gut, and my gut is telling me to seize every day with not only Sarah, but all of my children like it is their last. I hope my gut is wrong, and I am reading too much into this icky feeling.

Bob and I spent a good part of last night talking about all that has happened in our lives. We both know that at any moment any of us in our family could die. We all think that we are guaranteed a lifetime of memories and living, but in truth, that is just not the case. We are all on our own time clocks, and have no way of knowing just when our time here on earth is done. It is just a horrible feeling to know that your child has a disease that gives her a greater probability of expiring before she grows old and outlives you.

 I think that the next 6 months will tell me a lot about her disease. She will on Imuran at that point for a while, and we should be able to see how good of a job it does at getting and keeping her in remission.

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Now, all of that being said, I am done with my pity party. I refuse to let this disease beat me down. Yes, I will have my sad days and I will have some posts that are ugly. But, I can choose to get depressed about the way life might be, or I can go out there and live life with my family to the fullest. Being in a continued state of despair and sadness only passes the time by that I could be making memories with my family. Being sad only lets this disease win. I refuse to let this B&%^# beat me.

What a gift that is. To know that life is not an unlimited amount of time. To have that reality staring at Bob and I each and every day as we look not only at our daughter, but at our other three children as well. I no longer will be able to live in the past or in the future. I am forced to live in the moment. I don't want to look back in 5 years, and God forbid Sarah is no longer with us, and wish that I would have hugged her one more time. Or laughed with her, or told her I loved her, or played in the snow with her, or anything else for that matter just one more time. No regrets. That is my new motto.

And, if she lives to be an old woman, we will be all the better for it. We will have lived a life worth living. That is something that no disease can ever take away from us. No matter what happens to her physically we will find a way to live with no regrets and to create memories and to laugh and have fun.

Because of all of this - Bob and I have made some decisions:

 We are going to pull our house off of the market. This home houses our memories and our family's spirit. Yes, we can take that anywhere we go, but here, in this space, is where it is most alive. Sarah knows this house inside and out and I don't want to move her to a new home where everything is strange and unfamiliar. I also hate to be so morbid, but if she doesn't make it out of childhood, I am not leaving this house because there are reminders of her everywhere in this home. We brought her and Elizabeth home to this house when they were born, and this is all that they have known. I am not leaving this house. The kids agreed as well (not that we shared any of this with them. They agree to stay for other reasons). They have been having second thoughts about moving too because they are now at an age where they can bike to friends houses and hang out at a park nearby. Is our house tiny? Yep. Does it give us cabin fever? Yep. Do I wish we could magically make it bigger? Yep. But the fact is we cannot, so this is where we will be residing for a while. This is where our family's heartbeat is. Right here in this home. This is where we are staying. This is not a glamorous house and it is definitely not the place I thought I would be 5 years ago, but if time has taught me anything it is that we are all always right where we are meant to be.

We also are making this a year of trips and vacations. We sat down this morning with the kids, and have planned out several trips throughout the course of the year. Cool trips that will enable us to create a year that will be unforgettable for all of the right reasons. A year filled with love and laughter. A year filled with hope. A year and a lifetime of not EVER looking back and having regrets.

We will share our trips with you as each one gets closer.

Thank you for allowing me to vent yesterday and for being a bit dramatic today. Now, let's start having some fun, eh?

Sick of it All - A Mommy Tantrum

Bob and I were talking last night after he got home from work. He doesn't think that Sarah had an MRI of her spine which is why  her neurologist said that lesions on the spine do not hide, and if she had any we would know. Because Sarah is not having any mobility issues she did not have the spine scanned. I missed this part of the conversation and just assumed that when Sarah had her MRI on Friday it was of both her brain and spine. This now makes sense to me, but bothers me because this doesn't seem like very good science. How can you tell someone their child has NMO, but not test the one area that is most prevalent in showing lesions for that disease?

I want to know for sure if Sarah has or does not have lesions on her spine. I don't want to just be guessing because she doesn't have mobility issues. Of course, the thought popped into my mind as I lay in bed,  what if her bladder and rib cage issues are a result of the NMO? What if they have nothing to do with the steroids or diabetes? What if they are both linked together somehow? Not a nice series of thoughts to have when one is trying to fall asleep. Needless to say that on top of getting up with Sarah to use the restroom last night I didn't sleep well because of the thoughts running rampant through my mind.

I woke this morning in a super crabby mood. I am just so sick of myself and all of this bull%$*&. I am sick of always feeling like things are going to get worse for Sarah. I want her to be well. I am tired of having to do so much freaking research on my own because the doctors that are supposed to be helping Sarah aren't doing so.  I am tired of trying to make good choices and not having them pan out.

 I am sick about all of the "right" choices Bob and I have tried to make for not only ourselves, but for our children, and not having them pan out. It makes me sick that we bought our house thinking it was a good investment when in fact it was a terrible investment. I am sick about the fact that we dumped tens of thousands of dollars into degrees for both of us and a master's degree for Bob that don't look like they are going to help us any.

I wanted more for my life than to live the life I am living. I wanted to be able to provide more for my children. We should be able to provide more for them. We've played by all of the rules.

 I am sick and tired of making plans and then having them fall through or trying to get ahead in life only to hit a brick wall.

I am tired to trying to create a life because it seems like someone or something is trying to hold me right here where I am at. Never moving forward. Just stuck. I feel that my kids are going to resent me for always trying something new and better and never succeeding. I am tired of always worrying if I am doing a good enough job. If I am a good enough wife or mother or daughter or sister or friend. I am tired of trying to see the good in myself. I am tired of Bob and I having to pass the burden of our load back and forth to each other. With each one of us carrying it until our soul is about to break just so the other one of us can get a much needed mental break.

I am disgusted with myself for constantly trying to come up with a game plan. ENOUGH WITH THE FREAKING PLANS!!! JUST LIVE LIFE. I may not have all of this time to plan this trip and that trip or this thing or that thing. Sarah has already lost some of her vision permanently. How long am I going to piss away our time planning stuff out? How much more damage needs to be done to her eyes until I realize that each day I spend planning something is 1 less day that she may have to see all of the things I want to show her?!! I need to stop planning stuff. Just go out and do it for Pete's sake!!!! It is very evident that we don't have unlimited time to do everything that we want to. Life has shown us that we don't have the luxury that the mirage of 'forever' exists.

I am so sick of myself I make myself want to puke.  I don't understand why all of this bad stuff is happening to my family. We have a daughter who is very, very sick. We cannot sell our house. Bob's career is at a standstill. Life sucks. I am tired to trying to put on a happy face and gathering my children around in a circle and singing "kumbyah" with them. I am tired of trying to put on a happy face and trying to remember that there are others out there who have it worse than I do.

Yes, I am having a pity party. I am pissed off at both myself and life in general. I have no idea what I am doing with my life. I am tired of thinking that if Bob and I do 'A' then 'B' is bound to happen because that is what we are all told will be the outcome when one plays the game of Life.  Because it is a lie. Life doesn't make sense.

I am tired of waiting to see rainbows and the pot of gold that is supposed to be present in all of our lives. I am sick and tired of telling myself that life doesn't make sense right now, but someday I will look back on it all and everything will be perfectly understood. Because I have been telling myself that for a really long time, and it is about freaking time that something made some damn sense.

I am tired of feeling like I am running away from my life because it is too hard. I am tired of the amount of time I spend reading blogs or am Facebook or any other crappy website. I am sick of knowing what I should be doing, and doing the opposite.

I am just sick of myself and sick of my bull%^&*.

I am pretty sure this is rock bottom, but then again I have thought that before only to be surprised that the bottom gets much deeper.

I do think this might be considered a meltdown. Or maybe even a small version of a nervous breakdown.

I hope that there are other Mommy's out there who get sick of themselves too. I hope I am not the only one who gets sick of their own crap.

Thank you for letting me rant.

An Update on Sarah: The Verdict Is In (Well, Kinda)

Here is what we found out today:


1.) Sarah's neurologist is pretty sure Sarah has NMO. She is going to treat Sarah as an NMO patient because her symptoms are in line with NMO (repeated bouts of Optic Neuritis) and because the lesions on her brain are more in line with NMO than with MS. (But she is not completely ruling MS out because it runs in our family.)

2.) Sarah will still need to have a blood test done in a couple of months to determine if  NMO antibodies are present in her blood. Not only will a positive result indicate NMO, but it will rule out MS. A negative result will not rule out NMO though, because 30% of people with NMO do not test positive for the antibody.

3.) Sarah's MRI came back great. No new lesions. No active lesions. No lesions on her spine. Her neurologist explained that Sarah will know right away if she develops lesions on her spine because unlike the brain, which can "hide" lesions and where there will be no symptoms associated with those lesions, the spinal cord does not have the ability to hide lesions. Lesions on the spine will correlate directly with a physical disability in Sarah's body whether that is the loss of use in her arms or legs, etc...

4.) Sarah is now on a drug called Imuran. She will be on this drug for the foreseeable future. This drug greatly reduces (but does not eliminate altogether) relapses. This drug is the least risky of the three types of drugs in the drug class used to treat NMO. Sarah will have frequent blood tests to make sure that her liver is functioning properly as liver damage is one of the risky side effects of a drug of this kind. (Unlike the Avonex, my body is not telling me not to put her on this drug. I don't have the gut reaction to this like I had to putting her on Interferon treatment. I don't like doing it, but I understand that this is part of what happens when you are dealing with as serious an illness as NMO.)

5.) Sarah is B12 deficient (which surprised me as she is the second biggest meat eater in our family behind Bob) and will need to be placed on a B12 supplement and have regular blood tests to monitor her B12 levels.

6.) Sarah is having issues with an increased frequency of nighttime restroom breaks which could either be a side effect of coming off of her steroids or could be a sign of her having developed diabetes because she has been on steroids for so long. She will need to have a urine test if she continues to wake up over the next 3-4 days.

7.) Sarah's ribs have been bothering her lately which could have something to do with her NMO. Her neurologist asked us to keep an eye on that for the next month, and to contact her if the pain continues. For now, we have switched Sarah's mattress to see if it is something not related to the NMO.



I really, really like Sarah's new neurologist. She believes whole heartedly in the power of diet and its abilities to heal people. She is a big believer in exercise (especially yoga). She supports and has patients who seek out and use Eastern medicine ideas/practices. She believes in the healing power of acupuncture, and sees benefits in us trying that for Sarah (if we can find some place that will take a person her age).  She gave us a great list of foods to eat /not to eat, and I will share that with you another time. She also advised us to seek out a nutritionist if we needed help with dietary changes.

She agreed with me that MS would be a "lighter sentence"  than NMO, but was able to tell us about 2 of her patients who were diagnosed with NMO early on (ages 9 and 11) and are now in their early 20's. One of the patients, a girl, had a case of Optic Neuritis just like Sarah's. She just graduated from college, and lives a pretty normal life. She cannot drive because, just like Sarah, her vision has been compromised too much, but I was grateful for the stories of hope. I read on a website (here) that 32% of NMO patients die within 5 years of diagnosis (mostly) due to respiratory failure, pulmonary embolism, or urosepsis. I have been carrying that statistic around in my heart for the last week or so, and the weight of that knowledge was dragging me down in ways I cannot even explain. I know that, in reality, we all can die at any time, but the chances are pretty small that that will actually happen. To have a statistic like that staring at me was really hard for me to deal with for a while. (Granted, as my sister sternly told me, there is no way of knowing what type of lifestyle these people lead, how old they were etc...there are so many other factors that could have attributed to their death).  To hear stories of people not only surviving this disease, but thriving was much needed.

Right now, I am feeling pretty numb about the whole diagnosis. Honestly, I think that is very much a good thing. In the days that come I am sure all of this information will seep into my being, and I will start to actually process it all.