Welcome to Holland

We are just a few weeks out from the anniversary of Sarah's diagnosis. With her recent relapse I thought it was fitting to repost this beautiful poem that a friend introduced me to upon the onset of her disease. It should come to no one's surprise that this poem touched me deeply and made me cry when I first read it as it does to this day. 

There is such a beauty and a truth to this poem that I find myself nodding my head as I read each line. Knowing exactly what this author means, as does every mother of an abled differently child, her words sooth me; on my bad days they make me feel less alone. Over time, I have come to find this poem less as something to mourn over the life Sarah will no longer have, but more of a celebration of the life that she will (universe willing).  

So, if you never read this poem (I think) you are in for a treat. Without further adieu, here it is: 


 

Some Updates on Sarah

I know that many of you have followed Sarah's medical journey since the very beginning when her disease reared its ugly head back in 2013. I haven't written about Sarah in a while, and wanted to catch you all up on how she has been. 

Back when we were living in Portland she began to notice some changes in her left leg, specifically her calf. She noticed that her calf would intermittently become numb. There was no apparent rhyme or reason for this - it just happened and then would dissipate after a while. Months later she began to notice that the numbness was sticking around for a longer period of time until it no longer went away at all. We informed her doctor at the Cleveland Clinic, and it was determined that we should keep an eye on the numbness, but that there wasn't really much that could be done. The numbness wasn't bothering her ability to get around; it was more of an annoying sensation for Sarah than anything. Other than that everything else stayed the same - no changes in her vision, no other symptoms of her disease such as incontinence, paralysis, cognitive issues (no major ones anyway), etc...

Fast forward to our move to Indiana. Shortly after moving here Sarah began to complain of her left knee aching. Honestly, I thought it was growing pains. My legs would ache when I was little and I thought that she had just inherited this leg pain from me as her body shot up to the 5'8"+ height that she is now. She also began having some cognitive issues. It was hard for her sometimes to get her brain and her mouth to coordinate properly, so that her mouth could speak what her brain wanted to communicate. She would begin a sentence only to stumble on the words in the middle of it. It was like the connection between her brain and mouth was too slow and she couldn't get out what she needed to.  It was very frustrating for her. 

She had an MRI back in August of 2018, along with a follow up visit with her neurologist at the Mellen Center at the Cleveland Clinic. She was tested for a newly diagnosed disease called Anti-Myelin Oligodendrocyte Glycoprotein (MOG). This result came back positive. We finally had an official diagnosis. MOG was originally thought to be a subset of MS; then it was thought to be a part of the NMO spectrum. Now it is its own thing. The good news about this diagnosis is that (from what I read)  unlike NMO where you end up developing multiple autoimmune issues, MOG patients just have MOG. The bad news is that it is still similar enough that Sarah has a lifelong rough road ahead of her.  There are eight(8) main symptoms with MOG (and multiple non main ones): loss of vision, loss of color vision, paralysis, paraparesis (weakness) of limbs, loss of sensation, loss of bladder/bowel control, severe bladder retention, and seizures. (A great link to more information about MOG can be found here.) Other than this new diagnosis, we were told that Sarah was stable enough that she would not need to be put on any medications and that there were no new brain lesions showing on her MRI. Her doctor did request that she be seen twice a year now instead of once a year just to be able to keep a closer eye on her disease. 

Our lives didn't change much with this new diagnosis because Sarah was doing well and the symptoms (minus the seizures) are all pretty consistent with NMO. We were already mentally versed in the severity of the disease living within her. The only thing that really changed was the name. 

In February of this year, Sarah came out of remission and suffered a relapse. Her left leg began to get incredibly weak. She could not go up and down our house's set of stairs more than once or twice because her left leg would give out. She did not want to be out in public because she was afraid her leg was going to give out. It was shaky, weak, and unreliable. If this was not disconcerting enough, Sarah had her first seizure (a grand mal). I will spare you the details, but suffice it to say it was the scariest moment of my whole life. 

An MRI would later show that Sarah had one, possibly two, new lesions on her brain. An EEG also revealed that her brain was slowing and leaving a fluid that is known for seizure activity. She was immediately put on Keppra. For about two weeks life was really scary (as it was later explained to us by a pediatric neurologist specializing in epilepsy) because was having side affects of the Keppra entering into her system while also experiencing auras (the sensations one feels prior to having a seizure).  

A hospital visit was required both the day of the seizure and an over night stay was required the following week for her usual three day round of steroids to fight the inflammation. 

After receiving approval from our insurance company, Sarah began her first round of a chemotherapy drug called Rituxan that is used off label to treat patients like Sarah. She will have the infusion twice a year for the foreseeable future. The purpose of Rituxan is to put her disease back in remission and keep it there.  She will be having a follow up MRI in three months time to see if the medication is doing its job. 

Sarah is in good hands medically. We found a wonderful pediatrician that is overseeing her care here locally. She also has a local pediatric neurologist that will follow Sarah's Mellen Center neurologist's lead in the event of emergency hospitalization, so that it cane be done here in Indy instead of having to travel back to Cleveland in the event another hospitalization is needed.  She is also going to continue her care with her neurologist at the Mellen Center and is also being seen by a world-renowned pediatric neurologist who specializes in epilepsy at the Cleveland Clinic. She has an amazing nurse practitioner overseeing her Rituxan infusions. 

As always, I am trying to find out what I can do to help Sarah's body heal. The nurse practitioner  connected me to a hippie doctor at the Cleveland Clinic who specializes in autoimmune diseases. I am now reading a document on his beliefs in how exercise, diet, and emotional health play a huge part in staying in remission/healthy. I am very thankful that I came across his work because he makes me believe that there are things that I can do to help Sarah fight this monster that lives inside her. 

Sarah's spirit goes back and forth. Some days she is really hopeful that all will be alright. Other days she feels that she has no hope. As you know our family word is 'Hope' and through this relapse Sarah has chosen a second word that is more meaningful to her and that word is 'Courage'. I cannot think of a more perfect word for my daughter. 

Her leg weakness seems to be getting better. Although, like every other time she has come out of remission there is residual damage that most likely won't go away. She has only had that one seizure - which is so awesome - but all of her neurologists have warned us that there will most likely be more in the future. Her current does of Keppra is very low and while it is working right now, it most likely won't stay that way. 

We are hopeful that we can put this beast to bed again, and are thankful for the four and a half years we had in remission. 

February Reading List

I didn't intend for so much time to lapse between this post and the previous post I wrote, but it has been a crazy couple of weeks and I haven't had the time to just sit down and write. I also have a bit of writers bloc. I think of things to share with you all  during the day and then when it actually comes time to write something I draw a blank. I don't want to just throw down nonsense on these pages, so I choose to stay quiet instead. I should carry a small notepad around with me so I can jot my ideas down; when I have a moment or two to write I can whip that out and write a meaningful post.

Anyway, I read a TON in February and then Sarah had her relapse; March and April have looked pretty bleak reading wise. And although Sarah is not yet in remission she has certainly stabled out a bit, so hopefully I can get back to reading at full speed because I miss it.

Without further ado here are the books I have read (I will post March and April together in one post because their number is so measly):

February:

I have an almost obsession with Teddy Roosevelt. I am not quite sure why, but I have read four books (three of whom were quite substantial in size) on the man. I am captivated by his life. I will say that of the three books that make up this Trilogy - this one was my least favorite. This book focused on Teddy's presidency while the other two books focused on his life before his presidency and after. I don't know that I would read this book again (as I would the other two), but never say never. 

I have a growing interest in the lives of the people living in Afghanistan - particularly its women and children. The interest began when I was reading The Kite Runner and A Thousand Splendid Suns by Khaled  Hosseini. Dear Zari is non-fiction and I would highly recommend it to anyone interested in learning more about the lives of women in a country like Afghanistan. I was appalled at the way women are treated. It blows my mind having the freedoms that I do living in the United States that there are women who have zero freedoms and are seen as nothing more than worthless beings whose sole job is to produce sons.

There is something fascinating to me about the Amish way of life. There ability to live a life well lived without all of the modern conveniences I have. I think because I someday hope to live off the grid in a tiny house somewhere out west I am drawn to their rejection of commonly accepted ways of life. 

The opening of this book is the best opening I have ever read in my whole life. Seriously. I was SO excited about this story that I annoyed the bejesus out of Bob just talking about the first 3 or 4 pages of the book. It was that good. I felt like the book was written just for me. Oh. My.Goodness. And then....the book was an epic failure in my mind. There too many story lines going on with unresolved plots. It almost should have been two books. One to describe the actual bike journey itself and then a second to describe the emotional journey Jedidiah was on. I was so disappointed with this book that I just wanted to throw it across the room with disgust. After having such a good beginning -it had an awful finish (and middle). I can almost, but not quite, say that this book was a waste of my time. Just writing my own little review about is getting me agitated. You may read it and love it. I did not. 

I have a fascination with Teddy Roosevelt and have read quite a bit about his life story. I was intrigued about the life of his relatives. I have been to FDR's home on the Hudson River and heard stories told by the tour guides about Sarah Delano Roosevelt. (They were not good.) I wanted to get a different perspective of her. This book is just that perspective. It was an amazing read. I will probably read it again.

Sarah and I read I am Malala for school. I was very interested in reading a book from Ziauddin's perspective of Malala's story. I don't think I would read this book again, but I was glad to have read it once, I suppose. 

Anyone who has been following my reading list posts for any amount of time knows that I am fascinated with Native American History - particularly the Lakota Sioux Indians.  While this book did not focus on that subset of Native Americans it was a pretty fascinating read in that it appears that most of the white children captured would have chosen to stay with their Native American families (or what became their families the longer they were held captive). I will most likely order this book from Abebooks (the best used book website I have ever found) in order to read the book again.

A Quick Note

For a while I have been unsure of what to do with this space. My kids are growing older, and I no longer have stories about taking them to the playground or cute photos of crafts we have done. My boys, almost 19 and 17 now, have their own lives independent from our family, and I want to respect their right to live in the shadows - if they so choose. But at the same time, I am still a mother and in that vein I still have stories to share. I am still a person outside motherhood as well. And the truth of the matter is, I have been writing in this space for a long time. A good chunk of my mothering journey has been lived out on these posts. I am not sure I want to end that tradition. And then there are those that really connect with the words on these pages. The emails that I have received from some of you have really touched my heart. It gives this space a purpose, outside of telling my crazy stories, when I know that something I have written has deeply affected one of you because you, too, are living that same experience. That connection means something to me. I have long known that the things I feel are not solitary feelings. Most of us have felt the range of emotions that I have expressed over the years in these posts, but not all of us feel comfortable enough to put a voice to those feelings. To know that when I sometimes write about a topic it touches another person is an honor.

On top of all of this,  after weeks of thought, I realized that even though I do not have little kids running around anymore I do have an 18,16,14,12 year old running around my house. Navigating those teen years can be quite tricky, and perhaps if I share our successes and failures it will help one of you on your own parenting journey. I do believe that there is a way to be able to share my journey as a mother with all of you without causing too much strife in my teenagers' lives. There has to be a way to balance what I want to share with respecting their right to privacy. I am sure there will be some missteps along the way, but I believe I can find that perfect place from which to write from.

I cannot say with what regularity I will write with. I can tell you that it will be more than I have been. (Which doesn't say much, I know.) I want to live my life to live it and be present in it. I do not want to live my life constantly trying to come up with the next post in order to produce some regularity here. Does that make any sense? I hope so.

I can say that I am glad that I have stepped away. If I looked back over the course of my writing I would venture to say that my posts here slowly came to a halt beginning about two years ago - I should have just taken the time then that I have over the course of these last few months to step away and refocus, but  didn't, and that's okay too.

I can also say that I am glad I am back now. I had a little bit of time since the new year where I thought I was going to delete this whole blog and just step away entirely, I am really glad I sat on that decision and thought about it some more. Maybe some day I will print off all of my posts and then delete the whole space, but that time is not now. I still feel I have more to share.

Until next time, please take care. Thank you for staying with this space despite the irregularity of my posts. I know it can be frustrating, but hopefully it will have been worth it now that I am back.