A Birthday Girl - Miss Sarah

Dear Sarah,

Tomorrow is your 9th birthday, and I cannot wait to spend the day with you. I want you (and the whole world) to know that you are a gift from heaven. You were born at 9:22 am on a very windy December 1st morning 9 years ago. At 10 lbs 4 oz you were the biggest of all of your brothers and sister. You were the easiest baby. Always smiling and laughing and sleeping. You have always been the best sleeper. The December of your birth was probably one of my most sacred times of motherhood. Your brothers were totally in love with you as was your daddy. They were so careful around you, and always wanted to be near you. We were all mesmerized by your grace and beauty even as a newborn. I was so happy that you were a girl, and I felt an unbreakable connection to you the moment I laid eyes on you. 

My love for you is bigger than the sky. I would do anything, and I mean anything for you, my sweet angel. I know that this year has been very hard for you. I am sorry that there have been times when you have been very sad. I wish more than anything in this whole wide world that I could take your sadness away from you, and make it my own. Please know that although things in your life might not make much sense to you right now there is a plan for your life that is bigger than any of us. You were meant to do great things with your life. You were meant to touch peoples lives and change them forever after. I know that you have done that for me already. 

I am so proud of you. You are the bravest young lady that I have ever known. You are braver than a lot of grown ups too! I hope that you someday understand how many lives you touch with your beauty. You have an inner light that shines so brightly it illuminates not only yourself, but all of those around you. There is a saying, Sarah, that I hold dear to my heart and it goes something like this:

Some people come into our lives 

and leave footprints on our hearts 

and we are never ever the same. 

By Flavia Weedn

You leave footprints in the heart of every person you meet because you are just that kind of a girl. I hope you always remember how special you are. You are a gift to us all. 

Life is what you make of it, so let's make this the best year yet, okay? Let's have the most fun that we can, and see the most things that we can see. Let's walk on the beach in Cape Cod. Let's visit NYC in the spring. Let's make the most of the time we have - you, me, daddy, Andy, Josh, and Elizabeth - all of us together.  

 I hope that this year is full of making memories, laughter, and hope. I will be there with you every step of the way, as will your daddy. I know that he loves you with all of his heart too. I also know that there is no mountain that he would not move for you if he could. Your kindergarten teacher had it right when she nicknamed you Sarah Sunshine. 

I hope you never forget that you are loved. No matter where you go in this world, no matter who you become, no matter what you do - you will always be unconditionally loved. You are truly an angel from heaven. I love you so much. Happy 9th Birthday, Sarah Marion. 

Love always and forever, 

Mommy

Just a Hunch

A friend sent this to me, and I loved it so much I thought I would share it with you. 

Food = Stress

Food is driving me crazy. I never realized how complicated the whole concept of eating could be until I suddenly had a child whose well being might depend mostly on the foods I feed her. Eating food has become the most stressful part of my day. Because we eat 3 meals and snacks too the stress starts first thing in the morning and follows me all day long well into the evening and even comes along with me to bed.

I have read a lot of information regarding diet and MS. I have read a lot of information regarding supplements and MS. Both of these topics overwhelm me completely. They overwhelm me not because the research is complicated, but because it often contradicts itself. I am learning that there is a reason that there is so much contradiction and it has to do with the fact that the pharmaceutical and agricultural industries are HUGE, and they have a lot at stake if people were to change their diets.

I have a lot of information to tell you about, but I have so much information that presenting it in a blog also overwhelms me, so that will just have to wait for another day.  Blah!

Giving Thanks

 Most nights before I tuck the kids in for the evening I ask them what they are thankful for. Some nights their lists are long and other nights they may have only a thing or two that they can think of to give thanks about. I thought it would be appropriate on the eve of Thanksgiving to compile a list of things that I am most thankful for.

I am thankful for:

1. My husband. Bob is a man of honor. He is a hard working quiet man who tries his very best to provide our family with the best life possible. He carries the weight of being the sole provider for our family, and somehow always manages to provide just what we need. He is also a wonderful father who has built this family of ours day in and day out with me as an equal partner. Who knew 14 years ago that two twenty year old kids scared out of their minds at becoming parents could create a family as awesome as ours?
2. My children. I have four of the greatest children on the face of this earth. I mean it. My children, even though I struggle very much with my faith, are proof that there is a God. They are the greatest gifts that I have ever been blessed with and I am honored to be their mother. 
3. My sister. I have an amazing sister. She would do anything for me, and has time and time again. I can call her anytime and know that I will reach someone on the other end of the line who will  call me on my bs, but also is one of my biggest supporters. I wish everyone had a sister like mine. 
4. My family. My parents, aunts, uncles, cousins, and grandparents have always been a huge part of my life. They were a really big influence on me in my younger years and distilled in me the sense of family that I carry with me to this day. 
5. My strength. I did not have the easiest time growing up. Sometimes I felt very alone, and that I had no one to protect me when I needed it. I see those times as a blessing now because they have made me the person that I am today. I am not afraid to go against the grain and to stand up, sometimes alone, in what I feel is right. I would not have been able to do that if I did not have some of the experiences I did growing up. 
6. My friends. I have great friends from all walks of life that I love dearly. I am thankful that I have so many people in so many areas of my life that I could all in a moments notice and know that they would do anything that they could for me. 
7. Just enough. I am thankful that I always have just enough. Never too much or too little. I have just enough money. I have just enough of a house. Just enough food. Just enough clothing. I have never known what it feels like to be in so needy that I am desperate. On the flip side I have never had too much to cause me to be a glutton. Just enough is perfect for me, and I am thankful for that.
8. Second chances. I need second chances. I am thankful that each day I wake up now and know that I can see. I was blind before. Going through life without truly seeing the beauty in it. Sarah's MS has opened up my eyes in ways I did not even know they were closed before. 
9. Sarah's strength. I have a fighter for a daughter. In an 8 year old's body lies a tigress willing to fight any battle necessary to be well. Sarah's strength amazes me for it is boundless, and teaches everyday what it means to be a true fighter. 
10. Alternative medicine. I am thankful that there are others out there in this world who see the place in which we reside through similar colored lenses that allow me to have other choices besides the mainstream ones. 
11. Blogs. I am thankful that I know that I have a place to go where I can vent and share successes, and know that there are others who are reading this who are traveling on journeys not so far from my own. I am also thankful that there are others to whom I can go for ideas and an escape, momentarily, from my life to peak into how others live their lives.
12. Generous people. In six weeks time Team Hope was able to raise thousands of dollars for the National MS Society all because of generous people who took the time to make my family's cause their cause. 
13. Public School and Homeschooling. I am so thankful that I have the right to both homeschool my children and also the ability to send my children to public school. The ability for Bob and I to make these choices are not something that we take lightly. I am lucky to live in a society where I have that right. I do not take that for granted. 
14. Sarah's vision. I am thankful that Sarah can see. I know that it is not the same vision as it once was before, but for now, she has a good amount of her vision back. 
15. Memories made. I am glad that the kids are home during the school day and that Bob is currently working second shift because it has allowed our family to make some pretty great memories. These memories are nothing out of the ordinary, but that is what makes them extraordinary for it is the mundane and every day things that make us who we are. I am thankful that we have been able to do things as a family day in and day out that we will remember forever and will be a part of who my children become as they grow older. Memories like these are what Sarah will come back to should she, God forbid, lose her vision completely. 
16. Bob's employer. I am thankful that Bob works for a company that is flexible. He works for a company that values a work/family life balance. They have always been very good to him, and I am thankful that they appreciate his hard work. 

While this list is by no means all encompassing it definitely shows how very much I have in my life that is good. It is so easy some days to be down in the dumps by some of life's challenges, but really I have a lot to be thankful for. Tomorrow, as I gather around the table with Bob's family, I will bow my head and thank God for all these wonderful things in my life. I wish you also a very thankful Thanksgiving. 

Bad Mommy

I yelled at Elizabeth today for being her usual self, and she cried. I felt terrible. So, I hugged her and apologized to her for yelling at her. It's not her fault that she is the way she is. I need to learn to parent her better. She is not like the other three kids. She shouldn't be like them because she is a unique individual. She is quirky, spontaneous, and unpredictable. She is everything that I am not. Which maybe makes it so hard for me to see eye to eye with her so often. She is the kind of girl that puts her toe right up to the line - whatever line I set - and tries to get as close to it as she can without going over - sometimes I think she does it just to aggravate the heck out of me. 

But somehow, even though I get frustrated with her the most, she is always the first one to hug me. The first one to tell me how much she loves me. Most of the time I feel like her love is given more freely than it should be because I spend so much of my time trying to make her someone she is not. Elizabeth is 7 years old now. Whatever I had once hoped that she would grow out of is clearly not going to happen. Her wild and zany side are not a phase - they are part of who she is. 

Shame on me for not understanding who she is as a person, and for loving her just as she is. I know better. It is time that I stop asking her to step up to the plate and be the person that I expect her to be. It is time that I step up to the plate and be the mother that she deserves. 

Another CopyCat Post

I am part of a Pediatric MS Facebook group, and I have found it to be one of my most trusted comforts in learning to understand what it means to be the mother of a child with Multiple Sclerosis. Below is a posting that has made its way through the MS circles written by an anonymous soul living with this devastating disease. I thought I would share it with you because I know that Sarah feels very much the same way in so many aspects of what this person is trying to share with all of us who do not live with this disease day in and day out. I know that this post is long, I almost didn't read the whole thing when I first saw it, and my life is touched so closely with MS. If you can make it through I think you will have a better understanding of what it must feel  like to be living with MS.  




“Having Multiple Sclerosis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand Multiple Sclerosis and its effects. Of the people who think they know, many are misinformed. In the spirit of informing those who wish to understand… these are the things I would like you to understand about me before you judge me.

Please understand that just because I have Multiple Sclerosis doesn’t mean I am not still a human being. Some days I spend in extreme exhaustion. At times, sleeping for fourteen hours is all that will alleviate my symptoms. I get so tired. These emotions are all very strong and powerful. If you talk to me, and I might not seem like much fun to be with, remember I am still me. I am just stuck inside this body. I still worry about work, home life, my family and friends.

Please understand that Multiple Sclerosis is unpredictable. One day I may be able to do anything, while the next I may have trouble getting out of bed. Please don’t attack me when I’m having a bad day by saying, “But you did it before!!” Please understand that sometimes being able to stand for ten minutes doesn’t necessarily mean I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday, doesn’t mean I will be able to do the same today. This disease gets more confusing.

Multiple Sclerosis isn’t all in my head, and it isn’t contagious. Nobody ever died from Multiple Sclerosis though they might have wished they could on really bad days. I can’t control how often I feel good or how often I feel terrible. Multiple Sclerosis is a condition with lots of different kinds of symptoms. There is no cure for Multiple Sclerosis, and it won’t go away. If I am functioning normally, I am having a good day. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flare ups and suddenly become more sensitive mentally and physically. Other times there may be no warning. I may just suddenly feel awful. I can’t warn you when this is going to happen because there isn’t any way for me to know. Sometimes this is a real downer, and I’m sorry. If I seem touchy at times, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you understand. I have been and am still going through a lot. Multiple Sclerosis is hard for you to understand unless you have had it. It wreaks havoc on the body and mind. It is exhausting and I am doing my best to cope with this, and I live my life to the best of my ability. I ask you to bear with me and accept me as I am. I know you cannot understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding.

Please understand the difference between “happy” and “healthy.” When you have the flu, you probably feel miserable with it, but I have a condition that doesn’t leave. I can’t be miserable all the time. In fact, I work hard at not being miserable. Just because I sound good, doesn’t mean I feel good. I make myself be happy. That’s all. It doesn’t mean that I’m not in pain or extremely tired. It doesn’t mean I am getting better or any of those things. Please don’t say, “Oh, you’re sounding good!” or “Oh, you look good!” I am not sounding good, I am sounding happy. Because I feel bad at times, I am always pushing myself, and sometimes I push myself too hard. When I do this, I normally pay the price. Emotionally and physically I pay a big price for overdoing it, but sometimes I have to. I have no choice. My limitations, like my pain and my other symptoms are invisible, but they are there.

With Multiple Sclerosis, myelin, which is the covering that protects your nerves, deteriorates. Look at it as your nerves being an electrical wire, and wires have protective covering. If the covering is removed, the wire gets a short in it. This is the case with Multiple Sclerosis patients. Your nerves are a wire. The myelin can replace itself, but during the time it has deteriorated and the nerve is exposed, damage is done to the nerves in my body and this damage is not reversible. Thus, causing numbness, pain, tingling and other feelings.

If you want to suggest a cure to me, please don’t. I appreciate the thought. It’s not because I don’t want to get well. If there were a cure, all people with Multiple Sclerosis would know about it. Telling me I need to exercise more or that I just need to lose weight may frustrate me to tears and it is not correct. I work with a doctor and he tells me what to do for my condition.

In so many ways I may depend on you…people who are not sick. I may need you to call and check on me. I might need you to help me do things every now and then. You are my link to “normalcy” of life since I will never be normal again until a cure is found. As much as it’s possible, I need you to understand me.

People with Multiple Sclerosis have different kinds of pains and feelings that are hard to treat. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is jabbing and excruciating. Sometimes it is prickly or numb. At times it feels as though electrical shocks are going through the extremities of my body.

Another symptom I have is problems with memory and concentration. This one is very scary. I may tell you something, and thirty minutes later tell you the same thing. Please don’t say, “You already told me that.” I also might be trying to tell you something and use a wrong word instead of the word I should have used. This is very embarrassing and aggravating, but normal for people with Multiple Sclerosis. It is a very frightening symptom.

All these symptoms and the chemicals in my brain can get me depressed as you would imagine. I get angry, frustrated and I have mood swings. Sometimes it may seem I am being unreasonable, but I can’t admit it. I know this is a very hard thing about being with me. Every time you put up with me when I am in one of my moods, I am secretly grateful. I can’t always admit it at the time, but I am admitting it now.

I know I asked a lot from you, and I do thank you for listening. It really does mean a lot."

Education

I have always hated that in almost every area of my life I have my feet firmly planted on both sides of an issue. For example, I have the urge to both move my family out of state to  allow them opportunities of travel and to experience what it is like to make new roots, but then I have the urge to keep my family in the same town we live in now to give them the opportunity to grow up with the friends they made in kindergarten. I have wavered between wanting a simple life - a modest home and modest things and then wanting a luxurious life with a fancy home and fancy things. I have switched between the importance of conventional food and organic food so many times I have lost count.  My feeling on conventional medicine and holistic medicine each pull me towards their side in a vicious tug of war.  The list goes on and on. Often times I wish that I could just be firmly planted on one side of any issue - no matter if I was right or wrong - just so that I did not have to deal with the mental ping pong of going back and forth between life's biggest choices.

There is only one topic that I am glad and very grateful that I am firmly planted on both sides of the issue and that is public school and homeschooling. I have done both, and can see both the positive and the negative of both sides. I can see very clearly the points of those who lean very strongly in support of one over the other. I do not think that public schools are the enemy - there are many things that I do not like about them, but there are also so many good things about them. Homeschooling certainly is not a perfect fit for everyone, and there are a few downsides for those of us willing to be honest about it. But on the flip side, homeschooling has also been a wonderful blessing for our family, and for many more out there. I am grateful that I have the right to homeschool.

I bring this topic up because Sarah had been asking if she could visit her second grade teachers at the elementary school she attended last year. Contacting them was on my 'to do' list, and I was hoping to get her up to the school before Thanksgiving to be able to say 'hello' to them. Elizabeth happened to have a Daisy meeting at the elementary school this evening, and I brought Sarah with me. When we pulled into the parking lot Sarah thought she saw one of her teacher's car, but because of the late hour thought she must be mistaken. We decided to take a chance and see if the vehicle that she saw in the parking lot was indeed the one she thought it was. Lo and behold at their computers were not one, but both of her second grade teachers from last year working diligently on their school work. Sarah was so excited to see them. They were happy to see her as well, and after 15 - 20 minutes chit chatting with them we bade them farewell with hugs and well wishes for a happy Thanksgiving.

It was so great to see them. I think that seeing them made Sarah's day. For as much as I think there is wrong with the institution of public education - those women are everything that is right about it. School had let out over 2.5 hours earlier, and here were these women who were still in the school building preparing lesson plans for the following week. It is the teachers that I love so much about public education. The kindhearted women and men who wake up extra early to get to school to make sure their students have the best day they can, and who also stay after to make sure that everything is in place for the following day and weeks to come. These teachers take what is given to them, in terms of mandates by the government, and make something great out of it. I especially love the teachers from the kids elementary school. With rare exception we have truly been blessed by those dedicated and loving women (and a man) who work tirelessly to make sure that my children got the best education that they could provide within the scope of their resources.

I do miss the people that I got to know at the elementary school over the years. I think that is what I miss most about homeschooling my kids is seeing the friendly faces of teachers and staff day in and day out. (Of course, on the flip side there were a few people that I am so grateful that I do not have to see day in and day out. These people though, are the rare exception.)

In saying all of this, I feel that homeschooling the kids was 150% the right thing to do this year. I am extremely glad that the boys came home as I was less than impressed by the middle school. I am also glad that I asked the girls to come home for this year as well. I do not think that Sarah would have done well in public school this year with her eye issues even with all of the help that the school offered. I think it would have been very stressful to have her there (for her). Would I be surprised if the girls asked to go back to school next year? No. Will I let them? Yes. I asked them to come home for 1 school year. If they choose to go back next year, then so be it. I will honor their request. If they choose to want to stay home I will honor that request too. I love having my kids home with me. If it were up to me I would homeschool all of them right through graduation.

In the end, only time will tell what the future holds. What I know now is that I am extremely grateful for the staff at Lincoln Elementary and I am extremely grateful that I homeschool my kids. Having my feet firmly planted on each side of the education debate is exactly where I want to be.

Dinner Time Changes & Other Miscellaneous Things

I could honestly write everyday about all of the new things that I am learning about diet and nutrition right now, but instead of boring you and making this blog solely about those things I am going to try and write one larger blog each week about the things I have learned. Since I wrote up a big post about our new journey yesterday I will begin next week. There are some pretty neat things I will be writing about, so stay tuned.

On another note - Josh and I were talking two days ago about how nice it would be to switch dinner and lunch in our house so that we could eat our main meal together as a family. Since Bob works second shift we only have an opportunity to eat dinner together twice a week. Up until now, we haven't made a family lunch a priority and everyone eats his/her lunch when they see fit. We decided that it is important for us to eat as a family as many days a week as we can which for us would mean to eat our dinner meal for lunch and our lunch meal for dinner. I am excited about this for a few of reasons - 1.) we get to eat together almost everyday, 2.) I am not the only one who will be preparing meals, 3.) when sports begin again it will be so much easier to just plan on having soup and salads or sandwiches (if we are still eating those by that point) at the dinner hour than coming up with some big meal.

We implemented this plan today, and it worked out beautifully. All of the kids helped out preparing the meal - Andy and Sarah made the salad, Elizabeth and Josh set the table, Josh also helped with grilling the chicken and portobella mushrooms, and Bob made the best baked jo-jo's ever out of baked potatoes, olive oil, and some seasoning. It was some good eating, and it was nice we got to eat together as a family.

Sarah's birthday is coming up in less than 2 weeks. She is really excited about it. Given all that she has been through these past 6 months her birthday will be an extra special one this year. We are going to allow her to have a small friend birthday party. This will be her first one ever, and she is very excited. Bob and I are looking forward to taking her out on her special day and having a day all about her that does not involve hospital stays. A day of fun and carefree joy is what she needs. I know Bob and I need that too.

Schooling is going well. We have broken up our days into group work days and then individual work days. On group work days we double up the lessons on grammar (boys), writing (boys), logic (boys) and Latin. We also do science and history. On individual work days the kids double up on spelling, math, grammar (girls), writing (girls). This way the same amount of work is being completed each week we just get it done in blocks of time over the course of 4-5 days a week instead of doing each subject a little bit each day.

We haven't had a showing on our house in weeks. We are looking into what it would take to rent this house out, and then just buy a new one. It might make more sense for us to go this route than to sell this house, and then buy another one. We will still keep out house on the market until March, but I don't think that it is looking too hot on selling this baby. I feel strongly that whatever is meant to be will be. Neither Bob nor I are in a super rush to get out of this house - yes it would be nice to be able to move, but we both know that it will happen one way or another in time. Besides, we have bigger fish to fry right now.

Our Food Odyssey

I know absolutely nothing about food. I have come to realize this in my quest to help Sarah keep her MS at bay through diet. I was/am totally that urban mom who thought she was so hip because she bought organic food for her children, not knowing anything about the nutrients or vitamins that were being consumed, but just thinking that because it was organic it must be good. Oh, how wrong I was...I was not hip chic, but in some cases, a sucker for good advertising.

When Sarah was released this last time from the hospital I felt a paralyzing urgency to fix her diet immediately. I felt that if I did not do so RIGHT NOW that I was dooming her to a world of blindness, and the Western medical world, some of our friends, and family would have said, "Told you so, you should have medicated her from the beginning". Two weeks ago was one of the darkest times of my life since Sarah's diagnosis because I felt solely responsible for her health and care. Bob and I were (and are) on the same page in terms of her care, but I am the primary cook and grocery shopper in our family, and therefore I felt that the knowledge of her diet should come solely from my research (and a decision would be made on our new diet by the whole family based on the research I had done).  That burden was crippling me to the point that going to the grocery store was (and still is) sending me into a tiny anxiety attack.

To compound my stress is the fact that with the exception of taking a Vitamin D supplement there is contradicting advice regarding diet and MS, and just diet alone - EVERYWHERE!!!! How is a person with little knowledge of diet and nutrition (I would put myself a little bit ahead of the game in some respects) supposed to make the best decision for the health of her family if every piece of advice has counter advice!?

My sister pointed out to me one night after I had expressed my anguish over making the right decision for Sarah, in terms of changing our diet, that even if it takes me 6 months to figure things out - she will be okay. She won't have lost her vision in that short amount of time (I was told by one doctor that she would lose her vision by the age of 28 if I did not medicate her. Another nurse told me that if I did nothing she would lose her vision by age 15. This is mostly where my panic was coming from.) She is, of course, right about this. My panicking and feeling like if I don't make dietary changes right this second aren't helping an already stressful situation.

So, I formed a game plan. I am going to read as many books as I can get my hands on regarding MS and diet. I have begun to research some online articles as well regarding the same topics. Then, as a family, we will be making some decisions - obviously, not everyone holds equal weight when it comes to what we choose to do, but we want everyone to be involved none-the-less.

The first book I read was, The MS Recovery Diet, by Ann Sawyer and Judi Bachrach. It basically said to eliminate eggs, yeast, legumes, dairy, and gluten from your diet. It also mentioned eliminating red meat and most sugar too. I will be completely honest, I began to think that the only foods that we would be eating is bark and tree leaves when I saw that list. I slowly, saw that there are some foods that can still be eaten by eliminating these foods, but this would be a complete turnaround from our current diet. We are a gluten family, and eat pasta, pizza, and bread a lot around here. I make breakfast most days of the week from scratch, but we eat pancakes, muffins, waffles, french toast - all things that use gluten, sugar, eggs, and dairy. I just finished the book this afternoon, so I have to take some time to absorb what I have read, but it looks pretty ugly. I can be sure that if we try and implement this new way of eating over the course of a couple of months that I will lose every pound that I have gained back since Sarah's diagnosis.

There are a couple of other books I want to read too - I don't know if they will be as extreme as this - but I will certainly find out. I will be also learning about nutrition not related to MS as well - what nutrients and vitamins do I need as a human being to survive at an optimal level? Not only what foods should I be eating, but more importantly WHY should I be eating them. Do they provide Iron, Vitamin K, Omega-3's? What is their value once the food items enter my body?

I feel very much like I have to know my stuff, not only for my sake, but so I can present information to critics who may not understand why we have chosen to start with our diets and exercise as a way to help Sarah become healthy again. Mostly importantly though, at the heart of all of this, is that I have to know my stuff in regards to nutrition because this may make Sarah better - not cured - but better. At the end of the day, I will do just about anything to make her feel better. I want her to live her best life, and if this is the way that I can help her to make that happen then so be it.

What this means for you, my dear reader, is that you get to go on this odyssey with me. I am going to be bouncing ideas off of you, and sharing what I learn along the way. I will be relying on your support to point me in a new direction if I get stuck. There is so much information out there, and I want to soak it all in, please share with me what you know. I may choose to use your information or I may choose to pass on it, but having access to as much information as I can is truly important to me right now.

Off to more reading!

Above and Beyond

Sarah's ophthalmologist is our family's favorite doctor. I, hands down, respect him and feel more gratitude in my heart towards him than any other doctor (although her pediatrician comes in a close second).  He has consistently gone above and beyond his job description for our family whether it is by trying to hunt down a new neurologist for us this past summer (before we were dumped by the Cleveland Clinic doctor) or by helping me find another drug treatment option other than Avonex. He doesn't have to do any of this, but he does it anyway.

It's funny because when Sarah was first diagnosed with Multiple Sclerosis and we had to see a parade of doctors that first week I thought I was going to like this doctor the least. He had a ton of fancy awards and magazine articles plastered everywhere in his office that he received and were written about him. I figured that he would be an arrogant doctor who didn't listen to his patients because he knew everything about everything related to the eye. Boy, was I wrong.

Dr. Locastro is definitely efficient, but not in a rush you out of the door kind of way. His time is valuable, but he recognizes that so is ours. We have only had to wait in his waiting room once for an extended period of time, and that was because he squeezed Sarah in on a moments notice because we noticed an issue with her eyes. He is professional, but warm. I have yet to make that man laugh or crack an extended  smile, but I am working on it. The best thing about him though is that he is not just a doctor to us. He is a father. He is able to step out of his doctor coat and relate to me as a parent, and the advice he has given me when his father coat is on rather than his doctor one has been invaluable. I don't know too many doctors willing to offer me advice as a parent instead of maintaining their professional facade.

He is the doctor I turn to when I have a question that I cannot get answered by anyone else. He has called our family after business hours to help with questions that we have had, and has come to see Sarah in the hospital after hours on the weekend - time when he could have been with his family - to make sure she was getting better. He very well could have waited the extra day, and we could have traveled to his office, the difference in her vision wouldn't have been that much more significant had he waited another day, but it was important to him to see her - he insisted on seeing her, and true to his word he came.

So, it should come as no surprise when I got a short note in the mail from him today, along with an article about an alternative drug to Avonex that has been found to be very effective in the initial clinical studies of keeping relapses at bay for MS patients, and also putting Optic Neuritis to bed in patients for years. I almost cried. Here is a man who understands my love for my child, as he is a father himself, who understands my concerns with Avonex, and who is busy with so many other patients of his own, and yet still took the time to research an alternative, effective, less toxic treatment than Avonex. This is an article he found in the Journal of Child Neurology - Sarah's neurologists should have been doing this kind of leg work for me, not her Ophthalmologist!! But there he is - not only researching alternative treatments, but printing out the article, writing me a short note, and having his staff send it off to me. That is something that more than just a good doctor does - that is something a man of character does.

It is things like this - going above and beyond - that make me understand why he has all of these awards and accolades. It is what made me smile when I saw that he added a new plaque to his wall this past visit - he was chosen as one of the best doctors in America for 2013 - but instead of smiling with contempt and cynicism as I did that first visit to his office - I was smiling because I knew it to be true and well deserved. Dr. Locastro is truly a wonderful, wonderful doctor. I can honestly say that he has been a lifesaver to me - both emotionally and mentally. He made me remember - that it is Bob and I - not Sarah's doctors that know Sarah the best - and although they have a lot of knowledge about what treatments work best for specific diseases Bob and I know what will work best for Sarah based on the information they give us. This treatment is definitely something that I am going to research the heck out of. I am excited that there are other options on the horizon other than the one that we were basically told was the only option - Avonex. I am glad that I listened to my gut in turning that down - for now - because had I not done that this option would have never crossed my path. Little things like this - an article in the mail - mean so much to me. It is easy to feel like a crazy person when you are pushing back on the world - telling everyone that the course that everyone follows might not be the one for you right now. That this specific drug that almost everyone uses (or a similiar one) may not be the right course for your family, and more importantly for your 8 year old daughter. You really start to question your sanity, and your gut, when a top neurologist at a world renowned hospital drops your daughter as a patient because you ask for more time in researching the course of treatment he is recommending.  Small miracles like this are what keep me going. Dr. Locastro didn't have to do any of this for us. He could have just treated Sarah for her Optic Neuritis only, referred all of our questions to her neurologist(s) and then have been done with us. Instead he chooses to go above and beyond for us time and time again.

It is fitting that I should have received such a wonderful gift in the mail today given that Thanksgiving is right around the corner. In all of the anger and sadness and confusion that I have been feeling lately, it is nice to be reminded that I still have a lot to be thankful for. I will never forget all that Dr. Locastro has done for my family these last 6 months. He has given me a new sense of hope, and there is nothing better in this world than that.

A Mommy Time-Out

I knew it was coming...I could feel the emotions building up until finally this morning I had just had it. I explained to my entire family that I expected chores to be done and school work to be completed. I let them know that their dad was a fully capable human being (something he is prone to telling me more than I would like to admit it), and could answer any of their homework questions. Then I left the house. I treated myself to lunch at Panera Bread, ran an errand, and then just wandered aimlessly through the aisles of a local bookstore for 2 hours. I needed a break. Big time.

I spend so much of my time doing and being everything for everyone else that I do not take anytime for myself. Most evenings lately I fall into bed completely exhausted, but unable to sleep due the unending list of things to think about. I get up in the morning only to begin the day taking care of everyone's needs all over again. Don't get me wrong, taking care of my family is the greatest honor and privilege that I will ever have on this earth, but I need a break too.

So, when I came home from my outing today I let my family know that once a week I will be leaving for the morning. Each and every week they will be on their own to fend for themselves (with Bob's help), and will have to get things done without me. I deserve it. Every mom does.

It was so nice to spend as much time as I wanted - guilt free - walking down each and every aisle of the book store. Besides nature, bookstores are one of my most favorite places to be. There are so many endless possibilities and ideas just sitting on the shelves that I find it breathtaking.

I felt so restored when I walked out of that bookstore. It was amazing. When I walked back into my house chores had been done and children were doing school work. All of the people that make up our family were humming along nicely. It was good for them to see that they could make it without me for a while. It was good for me too.

When Did Food Get So Complicated?

Organic? Conventional? Grass Fed or CAFO? Free Range? Cage Free? Natural? Whole or Processed? Gluten Free? Lactose Intolerant? Meat Based? Plant Based? AHHHHHH!!!!

When did food get so complicated? I have never been more stressed out about what to put into the mouths of my family members than I am right now. I am growing increasingly frustrated in the way that food is not only presented to me, but that the whole process of selecting food to put into my body has become so difficult. 

As organic has becomes more and more main stream I worry that the lines of what qualifies as organic is becoming more blurry. I worry whenever profit is involved that my best interests are not really being looked after. I feel like I am sitting on ticking time clock and that I only have a certain amount of time to prove to myself, my family, and Sarah's doctors that her diet will play a big role in the outcome of her disease. 

I am so worried about making the wrong choice, that I will choose the wrong diet to implement in my family, that it is making me a crazy lady. The food we put into our mouths is consuming so much of my time right now that I am finding it hard to sleep. I feel like I only have one chance to make the right choice for Sarah and the choices are completely overwhelming me. 

What is the right way to eat? Is eating meat okay? How about only plant based food? Which food is less likely to cause my family illness? Should we avoid foods with gluten in them? I try and imagine what food was like 200 years ago. I bet there weren't as many illness and repercussions of eating as there are now. I find myself wondering what choices the men and women of that time had in terms of food. 

I really hate food right now. I hate all of the choices.  I hate how one study/person says that "this is the only way to eat" and then another study/person says "no, don't eat that way - eat this way". I hate how inadequate I feel and uneducated I feel about the food that is placed in front of myself and my children everyday. I hate that I do not know what nutrients my body needs and what nutrients my children's body's need. It makes me want to scream. 

What is the purpose of food? If put that way, I guess I would say that the purpose of food is to nourish one's body. Maybe if I look at it from that vantage point I could break food down into those things that nourish our bodies and those that do not. Maybe then I could determine if, of those things that nourish our bodies, if there is a better version (say, organic or conventional) of that item? Does growing it a certain way really matter? 

Oh, I don't know. I am a confused mess. I have no idea what to do. 

Fall Fun - In Pictures

Here is some of what our fall has looked like:

There is ALWAYS Hope

I received a phone call this morning from a nurse who works with the doctor who released Sarah from the hospital on Saturday. God bless that nurse and doctor. Not only did that nurse promise to have Sarah a taper by the end of the day she also found a neurologist who would take Sarah on full time at Akron Children's. We now have an appointment in December to see her. When I thanked the nurse for helping me, her response was that this doctor would never leave anyone hanging and that they were happy to help Sarah. I almost started to cry on the phone with her.

I was scared out of my mind yesterday. Questioning everything. Beating myself up for all of the choices I have made and not made, not only since May, but throughout all of my parenting life. I was losing hope quickly. It was a rough night, and I didn't sleep well.

And just like that, an angel from heaven (to me at least) comes down and eases my fears and restores my HOPE. I feel so much better than I did yesterday evening.

Bob and I talked last night about what our game plan is going to be. This whole thing threw us for a loop, but it was necessary. We needed to be jolted and tested to see how great our resolve was in not starting Sarah on Avonex. We both agree that now is not the time for her to begin this medication. We also both agree that there may come a time when she will need to be on it. We are not against treating her with this drug - we are against treating her with this drug without trying all noninvasive avenues that we can. Our plan is to change our diet, get her on 600 IU's of Vitamin D, 1.8 mcg of B12, and 1 tsp of her fish oil supplement.(I have done a decent amount of research over the last few days to know that these supplements are a good place to start. All 3 of these vitamins/nutrients are things that MS patients could use to repair the myelin and provide good cell growth. We are looking into a plant based diet as well as gluten free - both have been shown to help some people manage their MS better.) She will continue on her steroid treatment, and if all of THIS doesn't resolve her current eye issues then we will begin looking at Avonex.  This is what we both feel equally comfortable doing.

I was in such a dark place last night. This morning the sun is out, and a new light is cast upon our lives. Life is good.

What Happens When You Don't Do What The Doctor Ordered (or Suggested)

Sarah's neurologist from the Cleveland Clinic called us today (actually his poor nurse called us) to let us know that if we do not place Sarah on Avonex he no longer will accept her as a patient. He will also not prescribe her a taper that she desperately needs in order to safely come off of her steroid treatment (because we refused to put her on Avonex). So, we are hoping that the on call neurologist who prescribed Sarah her initial steroid dosage while we were still in the hospital will offer us a taper. We'll see...

What I do know is that I am looking for a new neurologist.

Life is really hard right now. It is a million times harder than I ever imagined it could possibly be. I feel like throwing in the towel. I am tired of fighting against the grain.  I wish I just did what I was told without questioning everything. Life would be a lot freaking easier right now, and Sarah would have a neurologist.

I am beating myself up about every decision I have made since our journey began. Maybe all of these decisions I have been trying to make with Sarah, and also on her behalf are worthless. Maybe I should just throw her on this drug despite my reservations because she will be seen as a "qualified" patient that pediatric MS doctors will treat. She will also be seen as having a compliant family that is easy to work with.

Or...maybe I should just tell this doctor to go take a hike. Maybe being kicked off of his patient list is going to lead our family to the doctor who is truly supposed to help Sarah. Maybe this whole experience today is a blessing in disguise. Maybe I was born a fighter, and a questioner because my life was leading me to this point. That if I did not question things then I would be putting my daughter on a drug that she was not meant to be on at this time.

This is definitely one of those situations that I could easily become bitter about. Or...I could walk away from it with no chip on my shoulder, but instead with the attitude that better things are yet to come.

The Silver Lining of MS

There are a lot of bad things about Sarah having MS. In fact, sometimes in seems like there are an insurmountable amount of terribly bad things, and absolutely nothing positive about the disease. BUT when I really take a look at our new life, and I watch Sarah and Andy and Josh and Elizabeth and Bob I realize that in this devastating grief there is good. It is so easy to let the grief and sadness and anger and anxiety weigh down not only in my heart, but in the hearts of all of those who reside in this house and live with this disease (whether as the recipient of it or a brother/sister/father of the recipient).  This last hospital stay took on new meaning for my life, not only because I wasn't sure if this was a new exacerbation or a continuation of an old one (and I am still not sure), but because Sarah doesn't seem to be doing as well as she has after prior visits to our second home - Akron Children's Hospital.  Her vision is not responding to the medication as it has in the past. Her stomach has been bothering her (a side effect of prolonged steroid use can be ulcers) every day for the last 4 days, and her body aches all over in a way that has not happened in a way that is new to us. She also has been getting bloody noses the last 4 days. I am scared this time around. (Putting her on Avonex - in case some of you are wondering at this point why I don't just do that - will not help her current condition - it will only (supposedly) help future relapses.)

You may be thinking at this point what could possibly be good about MS?  MS has given all of us several gifts, but me especially.

1.  We are closer as a family unit, and work better than ever as a team (most of the time). 
2. The kids are slowly beginning to understand that not all disabilities are seen. Some are below the surface, and are very hard to detect. 
3. Sight is a gift. For so long I have gone through life with blinders on - only paying attention to what was right in from of me - blinded by anything not directly in front of my path. Now, I can see that there was so much more out there than I let into my sight. 
4. Life is not about rushing through things just to be able to put a completed check mark by every event. I want us all (but, let's be honest, especially me) to be able to enjoy what we are doing each moment. To savor it. To see it. 
5. Health is a gift. I didn't see that before. I saw health as a right. The remaining 5 of us need to honor Sarah by taking care of our bodies. Sarah would give anything, ANYTHING, to have a healthy body. MS has shown us all that nothing is a given, and that you never know what tomorrow may bring. We owe it to Sarah to take care of what we have and to not abuse our bodies by stuffing it with crappy food, beverages, or anything else that is harmful. It would be a slap in her face if we didn't take care of her bodies, and I will not dishonor her by allowing myself or anyone else in this house do that to her.
6. This latest bout with MS has shown me that all of the hikes we went on the last several weeks were time well spent. If, God forbid, Sarah's vision were to permanently deteriorate I could teach her what 4+4 is without using her eyes, but I could not teach her how beautiful the fall trees look when their leaves change color. I want to show her as much as I can now, so that she can store it away forever. Being stuck in the house with book upon book isn't the best use of our time right now (although we are still doing book work, we are just doing it in the evenings). 

I never in a million years thought that I would find something good in all of this sadness, but it is there. I just had to look for it, and I am very glad that I did. I will carry these pieces of silver lining in my heart, and hope that they carry me through some of the dark days that I am sure will come. 

Hard Decisions to Make

I knew in the evening of May 18th, 2013 that our family's life had changed forever. It was irrevocably on a new path that was full of dark and unknown places. It is a blessing that I did not know how dark and scary this path could be at times because I am not sure I would have survived those first few weeks.

We are have now entered a fork in the road and we must make a choice of which road to go down. Each road carries risks for Sarah, but each path also carries potential advantages. Choosing which path to go down, I can say without a doubt, is going to be the hardest decision I have ever faced in my life.

Sarah is at a point where her vision should be getting better....but it's not. Her Optic Neuritis should have been cleared up after her previous encounters with the steroids she was on. She definitely should have had her vision restored after her first dose of IVIG in July...but she didn't. No one (meaning the doctors) can figure out why this is. Her vision does get better, but it never goes back to the way it was prior to the onset of this disease.

When she had her last MRI it was important to determine if she had new lesions. From what I understand (and I am realizing I understand very little about Pediatric MS) if any new lesions were found this latest vision loss would most likely be the result of a new exacerbation. A new exacerbation would be a bad thing because it was so close to her last exacerbation. The more relapses (or exacerbation) one has in the first two years of an MS diagnosis (I have been told anyway) generally sets the tone of what her life with this disease will be like. More relapses means more damage to her brain and spine which means more eventual disability. Among the disabilities one can develop with MS are:

Muscle Spasms
Heat Sensitivity
Extreme Fatique
Paralysis
Loss of bladder function
Tingling of the Limbs
Mental Changes Such as Forgetfulness
Epilepsy
Depression
Loss of Vision

And these are just some of the things that Sarah has the potential to face. Because of this disease she is already experiencing loss of vision, fatigue, heat sensitivity, and muscle spasms. If this last bought with her vision is a new episode it causes me great concern that she will quickly add other items on this list to the things that she is experiencing, and that it something that no one wants. On the other hand, because her vision was never fully restored to being with this last bought with her vision could just be a continuation of her first episode from back in May. (Optic Neuritis can last up to 6 months in some people.) There is the potential that if we could just kick this case of Optic Neuritis to the curb that she could be symptom free for years to come. 

So, I was very sad when the neurologist overseeing her care in the hospital told me that a new lesion was indeed found in her brain, but that it was not an active lesion so it most likely was not causing this flare up. (I had no idea that lesions were active/inactive.) We were also told that some of Sarah's lesions were getting smaller, and that some had even gone away. (Again, I had no idea this could happen either. I thought once you had a lesion it was there forever.)

The neurologist in the hospital was quite frank with us, and told Bob and I that because there was a new lesion on Sarah's brain this was most likely a second episode with her MS. (He did also say that he could not be positive of this though especially since the new lesion was not active.) He recommended that we follow her Cleveland Clinic neurologist's advice (or strong urging) that we place her on Avonex because this drug is known to slow down relapses. He said in Sarah's case, if this new bought of vision loss is indeed a second exacerbation then she is on par to have 4 relapses a year. He reminded us that every time she has a relapse she pays a price because every relapse causes more  damage to her body. He told us that if we do not treat her with something such as Avonex her chances of being blind by the time she is 28 are very great. He told us that she most likely will never be able to see what her wedding dress looks like and she will never know what her newborn child looks like. (At this point in the conversation with him I started to tear up because his words just sucked.) When I questioned him on the side effects of Avonex (which are lengthy and very serious), particularly on chance of her sustaining such great liver damage that she would need to be on a liver transplant list, he said that he can only go on probabilities. He said that because the probability of her losing her vision is greater than her chance of needing a new liver (although he did recognize that both could very well happen) he would put her on Avonex anyway. He told Bob and I that he would feel good about his decision to put her on Avonex, even if down the road she needed a new liver, because at the time he made the decision to put her on it he was basing his choice on the greater probability of her losing her vision. Now, all of that makes perfect sense to me - IF I was looking at this from an objective point of view, but because I am Sarah's MOTHER, objectivity goes out of the window. Needless to say, on Friday evening I was a hot mess. I felt like a terrible person for wanting to see if we couldn't just try to change a couple of things in our diet and make sure she was getting the supplements she needed (which have been shown in some to work), BUT I also felt in my gut that putting her on Avonex right now is not the right thing to do. I was starting to feel like a crazy person, and doubting all of my intuition until....

Dr. L (Sarah's ophthalmologist) came by to see her on Saturday morning. He did her usual eye test and determined that her vision is getting better, albeit at a slower rate than before, but getting better all the same. When I talked to him about what the neurologist said the day prior, and what my gut feelings were about Sarah's situation he agreed with a lot of what I had to say, and also put my mind at ease about several things. He told me that, he too, feels that this bought of Optic Neuritis is just a continuation of her first episode (which would mean that she is NOT on par to have 4 episodes a year), and that it was never treated with the right amount of steroids. He also let us know that it is very, very rare for someone who suffers from Optic Neuritis to lose their vision as an adult, and even more rare as a child. He did concede that Sarah is going through something unusual with her vision, and that the doctors that treat her will need to think outside the box in order to get things under control. The thing that made me feel the best though was when he told me that when it came to putting Sarah on Avonex that I needed to trust my gut. He told me that, in his experience, mothers are right 99.9% of the time. I felt a huge weight come off of my shoulders, and I almost started to cry. Here was a well respected top doctor in America, who was not shoving western medicine down my throat, but was instead is telling me to follow my intuition. What a Godsend this man is. 

So, for now we are going to look into different supplements and diet. It is not that I would never put Sarah on Avonex - because I would. Because of the side effects though, I feel that it is my job as her mother to look into every non-evasive treatment option that I can (within reason).  If diet, exercise, and supplements (like Vitamin D and Omega-3's) don't help her and in February for her next MRI (God help us!) she is getting worse, then yes, I would be willing to try something such as Avonex. It is so hard to make decisions that go against the grain especially with something as serious as what we are facing with Sarah. It would be so easy to just go with the flow, and have put her on this medication months ago when it was first recommended to her. It makes it even more difficult because I am not making these serious choices for myself, but rather my daughter, who at 8, cannot legally make these choices on her own. But I have to trust my gut that this is not the right time for her to go on this medication. We have talked with her about it, and given her the choice. Explained the potential consequences to her as well. She is on board with not starting Avonex right now, and so we will choose the alternate road for now. The road less traveled. 

These decision that we are making for Sarah are horrible, terrible decisions that I never thought I would have to face as a mother. I hope and wish every day of my life that Sarah understands why we made the decisions that we did for her. I hope that she never gets angry and resents Bob and I for the choices we have walked her through. All I have is hope. Hope that she will know that we made these choices with her with the best information that we had at the time. Hope that she will understand that every choice presented to us had decisions that were made based on our love for her and the desire to give her the best life possible. Thanks goodness for Hope. Without it I would be lost. 

Home At Last - Another Update on Sarah

"There is no place like home."

 Oh, how Dorothy hit the nail on the head. We are all home. All 6 of us, and it feels great. There is a lot going on with Sarah still. She had a vision test this morning and her right eye is 20/40 and her left eye is 20/50. There has been vast improvement in her vision, and for that I am truly grateful to Western medicine, but we still have a ways to go.

I am extremely tired, and therefore will not go into every detail of what is going on with Sarah right now. Being this tired and emotional makes me a bit dramatic. Drama is not needed in this type of a situation, nor anywhere in my life for that matter. Suffice it to say, after I have had a good nights sleep, and have had some time to think over what some of the doctors have said to Bob and I regarding Sarah's future I will let you all in on the details.

I will let you know now that the MRI of her brain did show a new lesion. This is bad news, BUT the MRI also showed some of her old lesions as getting smaller and some are even gone. (Which really confuses me because based on what I have read/know I didn't think that once lesions were on a persons brain they ever went away.) There is a lot of back and forth right now with some doctors giving our family information that is the polar opposite of what a previous doctor had said, so we have a lot of information to sift through.

For now, all I know is that the people that mean the most to me in this whole wide world are under the same roof. We will take the night to snuggle and love on each other. Tonight belongs to us. Tomorrow we can tackle all of the challenges we face, and decide as family with Sarah taking the lead, what works best for her in terms of managing this disease.