First's

When Sarah was diagnosed with MS not only did her life change forever, but mine did too. For the first time there was something that she was facing that I could not offer her support as someone who has been there before. Her diagnosis wasn't like a fight that she got into with her friends, or a test she was nervous about taking in school, or a big soccer game that she got the jitters over. I could not use my own past life experience to help her navigate through whatever she was facing at the time. Her diagnosis was something that I could offer her no advice on, and cannot tell her what the outcome might look like for her.

There have been other 'firsts' that I have experienced as well. It was the first time I experienced rage. The first time I experienced utter sorrow. The first time I saw my husband's heart break right before my eyes, as it did in the ER on the night of May 18, 2013. It was the first time I experienced, in a way that was different from the shallow hope I knew of in my old life, hope. A deep and vibrant hope that, to this day, still keeps me going even when I am scared out of my mind.

For the first time, I was also bestowed with grace. I have had so many people in our life, in our community, and even those not in our community reach out to us.  When Sarah's best friend decided to start a lemonade stand to raise money for Team Hope, I was blown away. What 8 year old kid these days does that? Not too many that I know of. What 8 year old kid stands outside hour after hour, day after day, holding a lemonade sign asking for donations to raise money for her best friend? What kind of child inspires her family and her dad's employer to raise money for another child, whom most of them have never even met? I will tell you the kind of child that does that: a child wise beyond her years. A child with a heart of gold. A gem in the rough. A child who was brought to this earth to teach us all a lesson in generosity and giving of oneself for the purpose of helping another. Leah made all the difference in the world to my daughter, and therefore made all of the difference in the world to me. Sarah's best friend was able to raise $1300.00!!!! Can you believe that? The amount of money amazes me, but  what I will remember years from now and what Sarah will remember years from now, is not the amount that she raised, but the example of true friendship that she showed not only to Sarah, but to me as well. Love comes in many shapes and forms - the love that Sarah's friend showed her is beyond compare and something that will be remembered by us all for the rest of our lives.

I also, for the first time, understand how much a small (or big) gesture can go a long way. I got a phone call yesterday from an acquaintance. She is a good woman whom I know through the school and through a mutual friend. She, too, has 4 children and an infectious smile and laugh. After Sarah's diagnosis she sought me out, and told me that if I ever needed anything that I could call her even if it was just to have a glass of wine. She didn't bombard me with questions about Sarah - she just came to make that simple statement and then she was off. I appreciated that because at that time in my life I was talking to everyone about Sarah, and was just plain talked out. She understand that without me even having to tell her, and knew that I was burnt out. Her simple gesture has stayed with me ever since she reached out. I talked to her yesterday and out of the blue she told me that her company was donating $500.00 to Team Hope. I cried. (Sarah, who was with me, just rolled her eyes. She is used to my tears of joy). Here was a woman who, could have been doing a million other things with her time and resources, and she chose to help Sarah. I was blown away by this generosity. Again, not because of the dollar amount (although that was awesome), but because someone whom I know very little about and whom knows very little about me took the time out of her busy life to help my family out. She didn't have to do that, and I will remember her act of kindness and gesture to help family forever and ever. It is simple gestures like this that really have made all the difference in the world. The fact that our plight has touched people in a place within them that moves them to try and help us out just amazes me for lack of a better word. These people, all of them, who have donated time or money to Team Hope or to our family in the way of baby sitting, etc...didn't have to do that. They all could have gone on with their daily lives, as I would have prior to this diagnosis, and put our situation behind them. Instead, so many people, stopped their lives for a moment, reached out to us in their own way, and changed me forever. I am a much different person now, than I was 2 1/2 months ago because of the generosity shown to me by a menagerie of people.

I am humbled by all of the 'firsts' I have experienced since May 18th.  I have been shown more about myself and those around me than I ever thought possible. I will carry all of these things with me always and forever.

Vermont

Vermont was wonderful. It was so nice to get away from life and go to a place where I could just relax. I was able to sort through some things, and although I do not have any conclusions yet I do feel that I am on the right path. That alone was worth the trip.

There is something about New England that I just love. The stone walls, the Cape Cod style homes, the rustic gray/blue and red, and white colors that are displayed frequently on dwellings all appeal to me. The history is rich and abundant, particularly in Concord where my friend lives and where we began and ended our weekend journey. I would like to someday go and visit again, and take a peak around Walden pond or many of the historical sites that surround the area. I also love the landscape. The natural surrounding appeals to my heart, and whenever I am there I feel as if I am truly home.
The mountains are amazing. Just breathtaking, and although M informed me that these are just hills compared with the mountains out West I still consider their peaks to be incredibly high, especially coming from Northeast Ohio where so much of our landscape (ok all of it) is pretty flat.

It was a 4 hour(ish) journey from Concord to Burlington. The ride was therapy in and of itself as each of us girls got to share parts of our lives that are so hard to do over the phone. We laughed, and almost got bamboozled at a gas station in New Hampshire when a man  asked us for gas money (he had Texas plates and was parked at a pump that did not work. We had a suspicion that the man was full of beans, but we started to feel guilty about denying him any money when we went inside to use the restroom. We needn't have felt too guilty because when we arrived back at the car  the man and his vehicle were gone. Apparently, money appeared to him out of thin air and he no longer needed ours.

Burlington is an amazing town. Nestled in the mountains of Vermont it is a vibrant and quaint college town full of unique shops and eclectic people. I fell in love with the place almost immediately. The town makes very good use of its lake access (unlike the Cleveland area). Our campsite had direct access to Lake Champlain and was a 2 minute walk from our site to the sandy beach. There was a path that followed the lake into town as well which provided a scenic route for us as we explored as much of the area as we could in the time provided. The water of Lake Champlain was clear and I could still see my toes when I was chest high in water. It was cool and crisp and just the right thing needed after sitting in the sun all day on Saturday.

I ate ice cream for the first time in almost a year at Tom & Jerry's flagship store, and it was amazing! I got a single scoop of ice cream in a huge waffle cone drizzled in chocolate. It was the best darn ice cream I have ever had in my whole life.

The campsite was quaint, and our site backed up into the woods so we had some privacy.  The only trouble we encountered was that we could not, for the life of us, start a fire. M came pretty prepared though, and we had both flashlights and 2 lanterns to use as a light source. We were both pretty tuckered on Friday and Saturday evening to begin with that I am not sure that a fire was really all that necessary.

My flight home was a blessing that started out as a curse. After I had boarded my plane on American Airlines the pilot informed all of the passengers that our flight was cancelled. I was freaking out inside a bit, but remained calm on the exterior because I knew that the airline had to get me home one way or another. The man sitting in front of me on the plane was having such a tantrum that I realized that some children never do grow out of those - he was a perfect example of a mantrum. He was making us all uncomfortable. So, instead of having a layover in NYC I actually was booked a direct flight from Boston to Cleveland via United airlines.  I had to hang out in the Boston airport for a couple of extra hours, but I no longer had to worry about a layover. It was a blessing in disguise. (Plus the booking agents from American Airlines loved me because I was polite to them when they were trying to find me another flight  and wasn't acting like a jacka!@. That doesn't mean I am going to fly American Airlines anytime soon. In fact, just the opposite - they will be the last carrier I choose.)

Overall, it was really a wonderful, wonderful experience. I look forward to the day when we both can escape again. We are very glad that we have husbands that see the importance of us getting away to sharpen the saw, and we are even more grateful that we are married to great daddies who can hold the fort down for the weekend.

My pictures turned out not so hot. I didn't take all that many because I was enjoying myself too much. There was a haze over the mountains in the distance both Friday night and all day Saturday, so my photos do not do the place any justice. Plus, M, is in a good portion of them (she is a total photo hog - gotcha M!!!) so I am not going to post too many of them out of respect that I did not ask her permission (nor am I) to post her photo on my blog. Because my blog is public I am almost positive that she would not like her face plastered all of the Internet.

Getting Some Clarity

I have the honor and privilege of going away this weekend. I will be heading out to the East Coast, and camping with a dear friend for the weekend. It will be just me and her without husbands and kids, and we both desperately need the break. I haven't really had a chance to think too much about the trip with everything going on here, but as the days get closer and closer to Friday my excitement has been growing.

Photo courtesy of: bing.com

This trip started out as just an inner thought that thrust into the open when M and I were talking on the phone one day. Just a general, "Hey, wouldn't it be great if we could get away for the weekend", type of thought that eventually turned into a reality at the prompting of both of our husbands who saw just how desperately we each needed to get away.  After comparing calendars for a bit and finally settling upon a date when we both had open weekends my husband booked a flight for me to fly to Boston so that M and I could then drive up to Vermont to camp for the weekend.

I love nature and I love M, so the combination of both in one spot is an amazing gift. I am looking forward to stepping back from my life and having a chance to evaluate it, and hopefully, coming away with some answers to a couple of things weighing me down. Nature soothes my soul, and I find that I gain so much clarity when I am among God's natural gifts to us. I am most at peace in nature and feel more like myself there than in any other place.

Photo courtesy of: bing.com

I am looking forward to coming home recharged and refreshed. It has been way too long since I have sharpened the saw, and I am glad that I have a husband and 2 friends who showed me how dull I have become. Sometimes (well a lot of the time) I am too stubborn for my own good. I am thankful for the push to get this trip off the ground.

Happy Weekend to Me and M!

The Best Kind of Day

Today was the best kind of day. Really and truly. The weather was perfect. Not too hot and not too cold - kinda reminded me of those autumn days that I look forward to each year. The windows were all opened this morning as the clouds rolled on through and the sun made its appearance in the sky. There was a perfect breeze that would gently blow through the house, and I repeatedly thanked God (yes, I actually did acknowledge His/Her/Its presence today) for allowing our family to experience such beautifully perfect weather on this mid-July day.

Chores were done this morning in the usual style, and then the whole family spent the day outside. I did the kids summer schooling outside on the picnic table today which the kids loved. They had no idea that we would actually be able to move our schooling around so that it accommodated our schedule and lifestyle. They were so excited when I suggested we do our reading and subsequent narration/review questions in the outdoors that they each dropped what they were doing and ran outside. They all seem to like what we are doing. Even the boys look forward to what they will be learning each day. Today as part of their assignment they had to gather up objects around the house and bury them in the sandbox in the backyard. Tomorrow they are going to pretend to be archaeologists from the future and dig up what their siblings burried in hopes to put together what type of society humans of today live in.

After our school work, we ate lunch, and then the kids began playing a made up game. They ended up playing together all afternoon, and are still playing together as I type this. I love, love, love hearing their giggles and laughter as they share these experiences together. I love their creative energy and the games that they make up. They have been playing for hours, and I have loved listening to them hour after hour.

I really needed today. Today reminded me of what a day will look like if we bring them home this fall. It was at times chaotic, but it was wonderful. Today was a day when I didn't have to worry about Sarah being too hot and overheating. MS seemed liked a distant dream. We were a family in our own little bubble today all enjoying each other, and the things that make us such a unique family.

If I could have days like today every day I would be in heaven. The world outside seemed as if it didn't exist, and it was just us. I love days like that. All too often our schedule is jam packed with this and that. It was so nice to just be able to relax and enjoy each other's company.  It was nice to remember our family motto - family first - and to put that into action today. We are all the better for it. 

Learning At Home - History

Although it is a little bit later than I initially intended to begin (I think I have a pretty good excuse as to why this is) we are going to begin our "summer schooling" today.  I am excited and nervous about the outcome of our trial schooling at home this summer. I want it to be successful, and to be able to continue it throughout the school year, but I am very nervous about messing up. I am also equally nervous, truth be told, about the opinions of those around me. I know that most of the people I know are most likely going to be unsupportive of my potential decision to bring my kids home, and I am a recovering people pleaser, so this makes me uneasy and nervous. I also feel guilty about bringing my kids home because Sarah's school has been so awesome since her diagnosis. Many of her teachers both past and present, and even the principal of her school have been just wonderful. They have each reached out to our family in their own way, almost all of them have donated to Team Hope, and this makes me feel like I HAVE to send my kids back to school. (I know, I know, my brain is ridiculous with its thoughts sometimes.) Possibly bringing my kids home has almost nothing to do with the teachers in our school district, and I don't want anyone to take pulling my kids out personally. (I talk this way, and I haven't even begun my summer schooling project - this could turn out to be a failure, and all 4 kids could be back at the public school in 6 weeks or so).

So, today we will begin with history. I chose history as the starting point because, honestly, history is my favorite subject, but more importantly the text books cost the least, so if this doesn't work out I am not out that much money. The classical method of home schooling (as explained by Susan Bauer Wise in The Well Trained Mind ) takes history, and explains it like a story, but not in the way that we learned it and that kids are learning it today. My kids will work in 4 year increments beginning with Ancient History and then continuing on through the Middle Ages, then Early Modern Times, and finally the Modern Age.  In this fashion the kids will learn history from a beginning point to an ending point and it will be taught like a story instead of chopped over time learning different points of history during different academic school years. We will be using the book, The Story of the World, (also by Susan Bauer Wise) and its companion activity book.



How History/Geography will look for my kids is we will read a passage in The Story of the World. Then the kids will have some workbook pages and some small writing assignments in regards to what we read. Then we will be going to the library to pick out more books to read about the topics we are currently discussing (classical education is very big on reading real books instead of text books). Then the older kids will be keeping track of the events we cover on a timeline. There will also be more writing assignments to incorporate the real books that we are reading (verse  a textbook). Then the kids and I will do an activity surrounding the topic (for example, in this first week we are going to create a mock archaeological site in our sandbox and the kids are going to "dig up" artifacts from our lives to see what a future archaeologist would conclude about how we live). We will also be locating on a world map where each place we are discussing is (or used to be) and also learning about that area of the world geographically.

Because most stories are best understood from the beginning I am going to be having all 4 kids working on the same topics at the same time. Each child will have grade appropriate assignments, so that each will be learning material suited to his/her level, but everyone will be learning about the same topic to make it easier for me to teach the kids all at once, but also to help them understand history more thoroughly.

We will be going to the store today to purchase their binders for the subject as well as to the library to take out the books that they will be reading this week on the topic at hand.

I am excited to begin this journey. It has taken me quite a while to get to this point, and I am ready to begin.

Family Time

In a rare moment of relaxed family time our family headed down to our secret spot in Peninsula to look for crayfish, throw rocks, and wade in the river.

Elizabeth "catching" shells

Elizabeth showing off her teeny, tiny shells.

Lily exploring with the kids.

Josh ready to go after 5 minutes - coming back from exploring.

One very unhappy camper. If it doesn't involve sports - this kid isn't happy.

Waiting for the rest of the gang to be done. He has had it by this point.

Daddy and his girls.

Lily super tired and super happy to be hanging out with the family.

The boys discussing strategy about rock skipping.

Andy looking for treasures in the water. 

Sarah enjoying a rare moment this summer of being a carefree kid.

Sarah watching over the crayfish she caught.

The family exploring the afternoon away.

The Learning Curve - An Update on Sarah

As a good amount of you know, Sarah was hospitalized again last Wednesday because she was losing her vision again. We came home from the hospital yesterday, and are enjoying being home immensely. The power of home has always had a strong pull on our hearts, but ever since Sarah's diagnosis that tie has only strengthened.

I feel like I have learned a lot in the past week, and that I am getting better and better at knowing not only Sarah's disease, but the way that hospitals and doctors work (or in some cases - don't work). Here are some of the things that I found particularly interesting:

1.) Not all hospital's are created equal. Sarah has been to both Akron Children's Hospital and The Cleveland Clinic. Most people would assume that the Cleveland Clinic would be the, hands down, better hospital, but I did not find that to be the case at all. Now, let me say that the Cleveland Clinic is an awesome place for a lot of people, and many, many, many people that I know, and have talked to have had wonderful experiences there. What I am about to say, is just my opinion based on my experience, and nothing more, so here goes nothing:

• There is a pecking order at the Cleveland Clinic that I did not find at Akron Children's. To me, a pecking order means that one doctor (or doctors) feels that he/she is superior than the others that they are working with. I came into contact with these doctors in droves as they congregated in Sarah's room most mornings to discuss things with my family related to Sarah's care and upcoming schedule. If someone feels and acts more superior than someone else I get the impression that what the "lesser" doctor has to say is valued less in the "higher" doctors eyes. I don't like that. I don't like that because sometimes doctors with a lot of experience get so set in their ways that they over look the individuality of each patients case and clump everything into general terms based on the entire population that a doctor has treated instead of seeing Sarah as an individual with needs that may be different than said doctors other patients. Whereas a newer doctor hasn't developed that "experience" yet and can see Sarah for what she is - a unique and individual person. A newer doctor might also be open to new ideas and studies and medications that might benefit Sarah. A pecking order also makes me, as the mother of a patient, feel like there is not uniformity and ease among the staff. I don't like that either. I want to know that everyone is on the same team - even if each person has their own opinions - I don't want to feel like there are competing interests that are trying to treat my child.
• The Cleveland Clinic is too big for my liking. Sarah had to have another MRI while at the Clinic and was told that she could not eat beyond midnight the night before her MRI, and could not drink past 8 am on the morning of for a 1 pm MRI. I thought that was a bit ridiculous to ask of a child, but I agreed. Sarah was hooked up to an IV and received fluid so that she would not become dehydrated. Her 1 pm MRI ended up being pushed to 5 pm because there too many patients that needed an MRI that day. This should have NEVER happened. The Cleveland Clinic should have enough equipment that they can service all of their patients in a timely manner - especially a child. Sarah's MRI was 2.5 hours, plus an hour in in the recovery room because she was put under general anesthesia, so she didn't end up eating until 9 pm that night. She had gone 26 hours without food. I wonder if her MRI would have been pushed back even longer if I had not had a mini meltdown at 3:45 (after MRI had been pushed back for the second time), and told the nurse that if someone didn't come get Sarah for her MRI by 4 pm Radiology could just reschedule it because I was taking my daughter to get something to eat. (Thank goodness for the great nursing staff we had because at 4 pm a wheel chair and doctor came up to take Sarah to her MRI which still didn't start for another hour after all of the hoopla that needs to take place to prepare a person for one of those.) I feel that if the Clinic has more patients than it can take on then it should either lessen its caseload or buy more equipment. An 8 year old should NOT have to go through what she went through for that.
• The Cleveland Clinic (unlike Akron Children's) does not provide private rooms. Sarah was lucky enough to not have to share a room, but twice during her stay she was informed that she most likely would be getting someone put into her room because they were running out of space to keep patients. People are in hospitals for very private and different reasons. I don't think that anyone should ever have to share a room. I don't care about the room size - even if the room is tiny - as long as it is private I am happy. I feel so strongly about this issue that I will not go back to the Cleveland Clinic if I have a choice. I would much rather take my daughter to Akron Children's where we have privacy, and are in a place where, for the most part, only children are staying.
• I will say that I LOVED almost all of the nursing staff at the Cleveland Clinic. There was absolutely no pecking order among the nursing staff, and I found Shannon, Stephan, Ali, Alison, and our favorite nurse, Amanda to be the most amazing group of care givers (outside of Natalie who works for Child Life in the ER at Akron Children's) that we have had. They were all hands down amazing people. They made Sarah's stay manageable, and they all kept us from losing our minds and going crazy at certain points during our stay.
• I also really like the neurologist who is overseeing Sarah's care at the Clinic. He is a good doctor who explains things in a way that I can understand, and takes as much time as needed to make sure that we are informed about Sarah's care.

2.) Because there is not a lot of information about childhood MS (particularly in children among Sarah's age group) I will essentially need to earn a doctorate in Sarah's disease. There are no true experts, I have found, especially since so much is still unknown about MS. Doctors generally take the information that they have on adults with MS, and play around with it to try and match it to children the best they can, but in the end it is still a guess. MS is so tricky and individualistic that our family will have a more intimate view of what her disease looks like than any doctor. Therefore, when a treatment is recommended or a condition is diagnosed it will be up to Bob and I to determine if that seems right for Sarah. I have had a doctor tell her that she didn't have MS, but rather, ADEM, a more common disease in children that mimics MS symptoms., and then that same doctor changed his mind after testing her and determined that she did indeed have MS. I have had 2 doctors tell us that Sarah has Optic Neuritis, and 1 doctor tell us that she is fine, has no eye damage, and he wasn't sure why we were even told to come see him. (I almost punched this guy in the damn face). We are her advocates and we need to make sure that we are looking out for her best interests. Doctors are trying to help her, but I wonder about whose interests some of them are looking out for, and after a particularly incredible appointment this weekend (and I don't mean that in a good way) I feel very confident in telling a doctor to go sit and spin if I don't like the way he is treating my child, or me, or my husband, or if I think he/she is blowing smoke up my butt (this, in case you didn't guess, is the same doctor I wanted to punch in the face).

3.) I learned that there are two types of childhood MS, unlike the 4 types for adult MS. Remitting/Relapsing, and Progressive. We are hoping that Sarah has remitting/relapsing verse progressive, but we will not know for another 6 months or so which kind has taken over her body. I also learned that these last 3 hospital visits fall under the same episode or exacerbation (using MS speak) which is a good thing, but it also means that Sarah's MS is not going into remission as of yet which is the place we need it to go for her to be able to live a normal life. I also learned that most children do not have to have the IVIG treatment that Sarah had this past week because the steroids alone usually clear up most children's (and adults) Optic Neuritis. The Cleveland Clinic also sees between 18-20 patients a year with childhood MS although most of them are in their teens. I learned that this may not be Sarah's last time in the hospital. Anytime she begins to lose her vision she will need to be hospitalized (or so we are told) to be given steroids as well as another round of IVIG (which takes 3 hours to give both drugs intravenously). I have also learned that Optic Neuritis usually only affects 1 eye, and the fact that both of Sarah's eyes are affected is another rare and almost unheard of symptom that makes her case so unique.

4.) Finally, I relearned the power of the human spirit. Sarah is the strongest, most amazing 8 year old girl ever . She carries herself with such grace and dignity that I am in awe of her, and have much to learn from her. This is the straw that she drew in this life, and she carries the burdens of this disease ever so lightly on her back. I am completely humbled (as I have been so often lately) by her inner light, and her will to carry on.