Blissful Summer

I probably haven't been as excited about a summer since the one after I took the kids out of public school in 2013. I know there are some parents who begin a countdown to the first day of school the moment the previous school year gets out, but that has never been me. I love when my kids are all home. I miss my kids when they are away from home. I miss the connections that are forged from being together day in and day out. I miss sharing every day experiences together.  I miss watching them make connections with one another as is wont to happen when you are with your siblings day after day. I miss...them.

The older my kids get the busier the seasons get and the faster they fly by. I expect this summer to be no different. Sarah is taking an online summer school class because she is working towards getting an honors diploma from the public school and would like to be able to have a study hall both semesters which requires summer school. She is also still volunteering at the horse therapy program on Fridays. Joshua will begin soccer in the next two weeks for high school. He also has some club practices and work. Andy will be working this summer and gearing up to begin classes this fall at the community college. My Elizabeth is the lone ranger with not much to do which is okay as she is only 12. Except for helping Sarah out on Friday mornings I don't have signed up for scheduled for anything.  I am not a huge follower of over-scheduling my kiddos. I want them to be kids for as long as they can. Part of that for me is carefree summers not filled with camps and activities, but filled with lazy days of pool time and park time.

With the four kids activities combined I feel that this summer will fly by, but I also am going to really savor each day that I can because just having the four of them here together on a regular basis is a big change from the school year. It is nice to have Josh home because during the school year he has school. After school Monday - Thursday he has soccer practice; Friday - Saturday he works and has soccer games which just leaves Sunday for us to really see him. I know that he enjoys this busy schedule, but I sure do miss him. I know the girls do too.

We have some trips planned this summer. In June, we will be heading up to Lake Erie in Ohio to camp for the weekend. In July, as of right now, we are heading to New York to spend 4th of July with my extended family. Before you know it, August 5th will be here and then Josh and Sarah will be heading off to high school for their senior and freshman year respectively. Andy will start classes in the middle of August. Elizabeth and I are either going to start her schooling when the kids do in August, or I might wait until after Labor Day to begin her school year. I haven't decided yet.

In the meantime, our development has a couple of community pools that I plan on taking the kids to almost daily. Elizabeth is like a fish and is ready to go to the pool the moment she wakes up and could swim until the pool closes at 8:30 pm each night. I also am going to try to schedule a field trip to a new location once a week this summer. There are quite a few things to do within a couple of hours drive around here. I think it would be great to explore as many of those things together as we can. Whatever doesn't get explored now Elizabeth and I will most likely explore together next school year.

Whatever happens this summer I know that one thing is for certain - I am so glad to have my people together. My kiddos are just amazing, awesome, fun people that I really enjoy being around. I am so glad I get to spend my summer with them.

It's A Wrap! Another School Year In The Books.

The Gregg family has officially finished its school year. Josh's last day with the public high school was on Wednesday, May 22. The homeschooled kids and I finished our work on Thursday, May 23. Because of some odds and ends going on this weekend that we had to prep for, today actually begins our first day of summer vacation. We are So.Excited. 

This year was a year of transition for me. Josh decided to enroll in the local public high school as a junior both to be eligible to play soccer in the state of Indiana (the law does not allow homeschooled students to play public school sports) and also to experience public school for himself. I had a really hard time letting him do this, but have always told my kids that homeschooling was a choice and that if they ever felt like they wanted to try public school it was their right to do so. It was really hard for me to stay true to my word, but I did it. Overall, I really think Josh was glad that he chose to go to public school, but there were definitely some bumps along the way that I don't think he anticipated. I know that Josh had some very specific issues with homeschooling that I think he thought would be fixed immediately when he went to public school. It was a bit of a shock to him when he realized that those same issues he had at home followed him to public school. He did a great job grade wise - he ended up with all 'A's and 'B's as final grades both semesters. Academically, the transition was pretty seamless and I am proud of the job that he did. 

Andy finished his senior year. I don't think it has really hit me yet that Andy is done with schooling at home. To be honest, I don't think it will hit me until I begin homeschooling Elizabeth in the fall and Andy is no longer in my lesson plans. Andy did a great job this year. He had some very specific learning goals and I let him have a bit free reign in reaching those goals. By and large, he completed what he set out to do. He checked in with me each week and wrote down what his specific weekly goals were and at the end of the week I would check in with him to see if he completed the tasks he set out to do and he almost always did. Sometimes some academic concept would give him a bit of trouble and he would need to spend a bit more time than originally allotted mastering the concept, but he would hammer away at it until he grasped it. Unlike the other kids, I have always been a bit more hands off with Andy in terms of what I required of him academically. I think in part this is because he just learns differently and needs his own space to figure things out. I call him my mad scientist because his brain seems to grasp difficult concepts (to me anyway) with much more ease than what most would consider easier concepts. Things like spelling and grammar have always been difficult for Andy to completely grasp; whereas scientific methods or trigonometry were easier for him to understand. 

Sarah had a pretty amazing year. She completed her 8th grade year of schooling. With the help of a tutor provided by the local public school, Sarah now knows the entire contracted braille language. She is about half-way through Nemath math and should be completely ready to begin her Algebra class in the fall when school begins. Sarah met twice a week with  an amazing braille tutor beginning in late October of this past school year. I still did all of Sarah's homeschool studies with her while her tutor focused solely on the braille portion of reading/writing/nemath math.  I really think that this was Sarah's best year academically. She learned so much both with her tutor and at home. 

Last, but never least, Miss Elizabeth completed her 6th grade year. Elizabeth had a breakthrough year academically. Elizabeth is a lot like Andy in her learning style. Reading and spelling are difficult for her and she has always struggled with both. Reading to me, is the gateway to true education. If a person can read, they can learn anything. Elizabeth not being at grade level for reading has been a concern of mine for a while, but I also knew that she would eventually pick it up. She has the benefit of having three older siblings so I am a bit more chill and relaxed about some educational things with her. I knew that eventually she would pick up reading faster/better/at grade level, I just had to give it time. Lo-and-behold this was her year. Elizabeth began reading a chapter book series called The Land of Stories. She loves this series and is reading through the books one at a time out loud to me. She enjoys reading them and will usually ask if she can read more than we planned on reading. This book series has been life changing for her because it has caught her up (almost) to where she needs to be. She enjoys reading and it is no longer a chore. THIS is what I was hoping for. Her spelling has also gotten better, although there is still work to be done. The spelling curriculum I finally settled on with Andy I actually use with Elizabeth and it works wonders for those kiddos who struggle with spelling. Just like with Andy, I have seen major improvement in Elizabeth's spelling. We will continue to work together to get it to where it needs to be.  Elizabeth is incredibly bright in math and we will actually be skipping a grade level of her curriculum next year and she will be doing 8th grade math as a 7th grader. 

While this year had a lot of highlights academically, as a mother I had a really hard time with this year. I missed Josh immensely and it was hard knowing that this was Andy's last year with me. The best thing about homeschooling the last 5 years prior to this one is that I have always had all of the kids with me. We were always learning together and taking trips together. I am happiest when I have my whole tribe together. When the six of us are together I truly feel like we can conquer the world. It has been a bit harder for me to let go of my kids as they grow away from me into lives of their own. Of course, I always knew that this is what is supposed to happen as kids grow; the concept of this wasn't foreign to me, but the application of it has been much harder for me than I realized. 

Next year will be no different than this one in terms of transitions. Andy will begin taking a couple of classes at the community college either in the fall or the spring semester. Josh will be returning to the public school for 1 semester of his senior year and then is coming home the second semester to complete his studies at home and will graduate with a homeschool diploma like Andy. (There is a long story behind that.)  Sarah will be entering the public high school as a freshman. Elizabeth will be the lone child home with me (which is going to be immensely beneficial to her). The forecast for the next few years seems like each year will bring some drastic new changes with kiddos going to college and/or entering the public school system. The plan is to finish up homeschooling Elizabeth in the next two years in order to have her enroll in the local public high school when Sarah is beginning her junior year there. (Now, I know that a lot can change in even just a year, so we'll see what ends up happening, but for now that is the plan.)

Overall, it was a pretty good year. I am glad it is over and am ready to begin the summer with everyone home. As much as all of these changes are hard for me I am also looking forward to them. In fact, I am already looking forward to the school year ahead. 

Oh The Places He'll Go!

Andy's last day of homeschooling is today. After that, he will officially be a high school graduate.  This sweet boy of mine has been such a gift. I am thankful that I got to homeschool him for 8 out of his 13 school years. I am thankful that we have had the luxury of being able to homeschool, and that we had options when he realized that public school was not for him.

Ever cautious, Andy has been slow in developing his life's plan. And although it may change a bit here and there, I do believe that for the most part the goals he has set out to accomplish for himself will be the ones he completes.

Andy has taught me so much as a parent and as a person. He truly, truly is one of the sweetest, most gentle, kindest young men you will ever meet. If he chooses to share his life with someone, that person will be lucky indeed.

Andy's life goals are to earn a bachelor's degree in Engineering and to become a commercial pilot. His main goal is to be a commercial pilot, but because that industry fluctuates so much with the economy he wants to have something to fall back on in case there are ever cuts in the airline industry that would affect him - that is where the degree in engineering comes into play. He would like to someday work for Microsoft and help develop devices for abled differently people like sister. He hopes to makes technology more accessible and user friendly to those whose bodies have different needs that your average person. Like most people, he wants to make a difference in the world, and I have no doubt in my mind that he can - and will.

Andy envisions himself moving back out west. He loves the outdoors and cannot imagine living his life without easy access to mountains that he can climb. He does not want to move to the southwest though, so I would imagine that he will end up in the Denver, Portland, Seattle area, but that is up to him to decide.

I am so excited for Andy. He has always walked his own path and always heard the beat of a different drummer. He has always been sure of who he is and who he is not, and I admire that greatly. I also respect the fact that he has pushed back when I have tried to mold him into someone he is not; the times when I have tried to make him hear the beat of a more "regular" pattern in life - the ones that most other kids hear. Looking back, I am sorry that I ever put him in a box like that instead of letting him shine brightly just as he was and trusting that everything would be okay.

He is the greatest of gifts and I love him to pieces. I believe with all of my heart that he is off to great places and that his life will be one grand adventure of his own choosing. As he takes flight, I am so thankful that I got to walk beside him for the last 19 years, and I look forward to seeing what destinations he chooses for himself. I will always be one of his biggest fans and supporters.

Here's to the future, Andyman. May you always be true to yourself. May you always be kind and just. May you be polite, but not allow yourself to be walked on. May you always know that when you fail or get knocked down by life, you will always have me, Dad, Josh, Sarah, and Elizabeth to help pick you up. May you always know that you are never alone; that there is a whole army of people who love you deeply.

Seeing. Stillness. Presence. Balance.

I think it is fair to say that I am almost always trying to better myself; I am always trying to learn or relearn things about myself that are most true to me. I feel that when I am living in alignment with who I am authentically I am content. Contentment leads to a sense of peace in me - something I rarely am, but constantly fight to be.

I turned 40 a little over a week ago. I am excited to be 40 and looked forward to that birthday for a long time before it actually happened. I have earned my age. I have clawed and scrambled and struggled to get through almost all of those years. I don't want to have to do that anymore. It is tiring and draining and, I am beginning to see more clearly, more often than not unnecessary. 

My biggest foe in life is myself. I cannot see myself clearly. I am my own worst critic - harsh and cutting. I am cruel to myself. When I allow myself a moment to try and take a look at the whole of me I want to cry at the woman I see who has endured years and years of self abuse. I want to hold that woman and tell her of her beauty. I want to whisper a million different kindnesses in her ear. I want to show her who I see her to be. I want her to see all of the good that I see. All of her successes. All of her beauty. I want to bestow grace upon her and let her know that it is okay to fail. It is okay to not have everything be perfect. That to have failures and imperfections is to be human. More than anything I want her to love herself because without love of self she can never truly love another.

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Because I often have a battle raging in my head I live a very distracted life. I am almost never really in the moment, although I am making some slow progress. I have been working on being present for a long time. The one thing I can say is that even though I still have a long way to go to quiet the violence in my head for a prolonged sense of time I am more aware of the noise now and can pick up its crescendo much more quickly; this allows me to focus my path towards presence and stillness much sooner than I have in the past quieting the war in my head.

Sometimes I get discouraged and wonder how it is that some people live without this critical dialogue in their head. How is it that some people don't struggle with the emotional baggage that I do? Then I remember that we each have our own struggles. That no one is immune to them. No one. My battle may be different from someone else's, but it doesn't mean she doesn't face her own foes.

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I have started to do a bit of reading about the power of the mind and of the conversations that I allow to happen in my head. I feel that a lot of my lack of stillness and lack of presence has to do with these conversations. I feel that I allow busyness to take over as a means of trying to drown out the dialogue in my head instead of facing those words head on. That state of busyness leads me to exhaustion as it feels like I am constantly running from something.

I need to learn to handle these conversations. I cannot take them with me where ever I go anymore. I have dragged them with me all over this country and they have only weighed me down more with each move. They have packed themselves into my psyche and feel like a ton of bricks. I must deal with them once and for all before they destroy me for good.

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I want to be able to live a life where I can truly SEE the true whole of me, not the awful picture the self-critic paints. I want to feel STILLNESS within instead of chaos. I want to stop the busyness and live in a state of PRESENCE - there is so much beauty in my life that I don't want to miss out on anymore. I want to find BALANCE to be able to live in harmony with myself.

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.