Why Law School, Why Now.

Aubrey walked the halls as a student of Divide County Elementary for the last time two months ago. It has taken me two months to gather my thoughts and feelings about that moment.  After two months in our new home of Grand Forks, this is what I think about it.  We love Crosby.  We love Divide County. I will always be so extremely grateful for the community that surrounded us with love and support for 7 years.  The community that lifted Aubrey up on a pedestal and taught her that her differenes are so special and how much she can contribute to this world.  I will forever be thankful for the support I had as I grew into a strong advocate for Aubrey and the unbelievable love I was shown through the many years I struggled to have Alexander.  There is nothing that can ever replace those years, those friendships or that place of comfort that will likely always be where we claim as "home".  

We have moved to Grand Forks, North Dakota where I am attending Law School at the University of North Dakota. We still have our house in Crosby and Seth is still living there, working in Tioga and making the trip back and forth from Crosby to Grand Forks on his days off.  The question is, why did we do that.  Why did I uproot everything that was so comfortable, so seemingly perfect, to start all over somewhere else.  The answer is, it was time. 

Imagine the biggest dreams you have ever had in your life.  Big, big dreams. The kind of dreams that put a smile on your face and make your heart happy if you could ever achieve one.  No, being an attorney is not that thought that puts that smile on my face or my ultimate life goal. Having Aubrey live in some sort of independent living situation as an adult does though. Her own little Crosby, full of people just like her. Being an attorney is just one step on the path that is going to help me get her there.  Moving to Grand Forks is part of a bigger plan.  

Aubrey is in 6th grade this year. Her class in Divide County will be moving to Junior High next year. The class that has had her back, seen her grow and cared for her like only children can, will start going in a different direction than Aubrey next year.  They will change classes, play sports, and esentially start growing up.  It was time for Aubrey to be a part of something different instead of being left behind in a mainstream setting, which was inevitable.  Aubrey is now in Middle School, in an autism only classroom.  She has 4 children in her class.  She has life skills classes, adaptive P.E., and a para whom she already has wrapped around her finger. She is thriving. I know she misses her friends from home, but now everything is on her level and sometimes being similar instead of different is not a bad thing. Aubrey will complete Middle School in Grand Forks. She will attend the same school, have the same lunch room, and love the same zip line on the playground for the next 3 years. 

Alexander is going to daycare at the YMCA (a.k.a. Big Boy School, as he calls it). It has been awesome and he will start swim lessons soon.  He will likely stay there until he starts kindergarten, in 3 years. 

Law school takes 3 years to complete. All first year law students take the same classes, so there is no focus area for now.  Get for real though, I know deep down what I want to do. I want to love what I do. I've seen the impact an attorney can make. I have seen what it is like when an attorney is passonite about her work and commits to giving her clients 110%.  I know my path will be different, but I want to take the fearlessness I have seen Liz exhibit with me and make my own path in the law. At the end of my 3 years of school, I want to take on the world, while keeping that big dream in mind.  At that point, Aubrey will be 14 years old, which still gives me a few years to make sure she is set up for the best possible situation once she graduates and nears adulthood. 

No matter if we have to be in a metropolitan area which has the type communities I envision for Aubrey or I have to build our own adult autism independent community in North Dakota, I believe this is the path I have to take to get me there.  Grand Forks is a step along the way, a way to set Aubrey on the best path forward. Big dreams take time to achieve. I have a lot to accomplish between now and then, there may be set backs along the way, and a few things are sure to change, but as to why law school, and why now - because it time to get started, I have a lot to get done.  

Papa Ray

I use this blog a lot to write about death. Maybe death comes too often in my life or maybe it is the only thing that hits me so hard that I feel like I need an outlet for it and this is that outlet.  Death is always a difficult topic, but this one hits harder and honestly, feels like a punch to the heart.  Seth's dad, Ray, left this world last Sunday.  It was unexpected and it sudden. 

He finished seeding on Friday, we went to golf course for lunch on Saturday and he visited with Janae on Sunday.  He made his rounds and then he left us. One very uplifting thought I have had since that day is, Ray has more grandchildren in heaven than he did on earth.  He has 8 grandchildren to tell stories to, read books, and go for Ranger rides.  For the first time in ever, there is sense to why Seth and I went through 6 devastating loses ourselves - to give Ray a giant family in heaven, just as he had on earth. He can love and teach and sort bolts with them now.  

A story that I often liked to remind Ray of was when Aubrey was born.  I didn't remind him of the emotional stuff, just the fact that he thought he was going to miss her birth. That it was not that big of a deal and that he'd see her later.  Also, after I learned more about farming and haying, I would ask him what the hell he was so busy doing on June 27 anyway. That is prime time between seeding and haying.  Literally, your least busy week from May until October.  I know what it was though, he didn't know yet what it was going to be like to be a grandfather.  He hadn't felt the love for a grandchild yet and he didn't understand how his life was about to change.  It's not that he didn't care or that he had better things to do, he just didn't know what this grandparent thing was all about.  Aubrey was, as she always does, about to change his understanding though.  

Aubrey was born at 2:19 am. Her APGAR score (a summary of the likelihood of survival) was only 1 immediately after birth. Her life was fragile.  Jeanie called Ray and told him that he better be on his was to Grand Forks.  He got out of bed at 2:30 in the morning and drove 5 hours to Grand Forks.  At this point I knew Ray, but I didn't really know Ray.  Seth and I had been together for a year and had been married for 5 months.  We had lived in Grand Forks and only visited his parents for holidays and what not.  I mean I knew them, but there was no real bond there.  Aubrey fought for her life over the next few hours and we waited patiently.  I can vividly remember this waiting room along one of the hallways and Seth and I met with the NICU doctor there to discuss transporting Aubrey to a different location or if we should keep her in Grand Forks. I remember walking out of that waiting room and Ray was standing there and he just took Seth and I in his arms and held us so tight to his chest and told us that he loved us and that this was going to be okay. I burst into tears and soaked up his love and that hug that I needed so badly. It was a turning point.  He was a grandpa and he felt it and he had to protect the situation and us.  Little Aubrey made it through and although it took him several more years to be cool with babysitting her, he loved her like no other. He loved to lecture me about her not wearing pants, shoes or whatever other clothing she had decided to forego on any given day.  He loved to take her on tractor rides, ask her if she saw certain things out the window and tell her to jump 10 times for fun.  His favorite line to her was when he would ask her a more complicated question and he would search her eyes to see if he thought she understood.  He would always say, "You know, girl, don't ya. I know you do."  He loved her and he knew that she loved him. 

By the time Alexander came along, Ray was had more than figured out this grandparent thing. He had a shadow with Alexander, a little "Mini Ming", but he was never going to forget that it was Aubrey who gave him the title.  It was Aubrey who made him get out of that bed at 2:30 in the morning to drive to Grand Forks to see just what it meant to be a Papa.  We will miss him dearly and Seth and I will have a long road to recovery from his death, but it is nice to know that all of our other children, the ones we haven't met, are keeping him busy and on his toes in the Great Unknown.  We love you Ray, may you rest in peace.       

When Everything is Not Enough

Currently, we are all in the middle of being isolated from the world.  It is a strange time for everyone. It is a difficult time for everyone.  For us, it has been no different.  I began distancing Aubrey on March 13, when I wouldn't let her attend a magic show at the high school.  I knew what might be coming and I didn't want to put her at risk.  That was on a Friday, school was cancelled on Sunday.  Aubrey has basically been isolated since that point.  My fears aren't that she will have severe respiratory issues (although that wouldn't be so far fetched), it is that she would spike a fever and that would cause serious issues with her epilepsy.  Aubrey has multiple absence seizures all day, every day.  Her last EEG showed that she has approx. 10 an hour, so we were working on changing her medications when social distancing.  I was worried that she was too susceptible to a big (clonic-tonic) seizure and that I had to take this serious from day 1.  So, for one month we played by the rules. For us this meant, Alexander's last day of daycare was the same as Aubrey's last day at school.  The kids couldn't go into any stores anymore. Aubrey would do all of her therapies from home, even though she had the option to do them at the hospital.  I was committing to online school with her, since she can't log into an account, complete work or navigate any part of Microsoft Teams, without direct assistance.  I was committed to sitting in front of that computer 5-6 different times a day, as she scratched my arm, pulled my hair, begged to be done, and insisted on "I want pillow".  I was cool with Alexander dumping baskets of blocks out in the floor in the middle of her lessons, demanding that he "go school", and redirecting him to his toy box in the other room.  Cooking every meal at home and begging my professors for extensions because I literally cannot find the time in a day to write papers or complete projects.  I was more okay than usual with the lack of sleep because Aubrey's sleep was worse than ever, either because of the new meds or the lack of activity - because, of course most of the past month has been cold in North Dakota.  I was all in with social distancing.  In the back on my mind I knew that I was so okay with all of this because I know what happened to Aubrey during the last global pandemic.  It's the one that people like to use for comparative memes.  In 2009 Aubrey fell victim to H1N1.  The result was respiratory arrest, weeks in the hospital and a tracheotomy.  I know what is like to see a baby in ICU and the idea that there may not be available ICU is nothing short of terrifying.  All in. Period. I was doing all that I could to prevent COVID-19 from touching my daughter and possibly causing a big seizure.

Tuesday was a typical day for us.  Aubrey completed two sessions with her paraprofessional, sat through speech, and worked in the living room via Skype with her physical therapist. Seth was on day shift and it was his last day.  Those are always the best days, but even more so lately. We were eating dinner and Aubrey resisted sitting with us for more than 2 minutes, not unusual.  She escaped to her tent in the living room, which is her new favorite hang out.  Seth took her dinner to her and nothing was out of the ordinary.  He made a loop around the table to grab his drink and then went back to her tent.  She was seizing. Eyes rolled back, unconscious, muscle spasms, seizing. He called me over and I went into reaction mode.  I grabbed my phone and called 911, while grabbing her emergency rescue medication.  I ran back to her and held her head while talking to the 911 operator. Then it stopped.  I cancelled the emergency response, Seth pulled her out of her tent and put her on the couch, I called my mom to come to be with Alexander and we took Aubrey to the ER.  The seizure lasted for about 90 seconds. I wanted to have labs drawn immediately so that we knew if there was any obvious cause. The thing with Aubrey is that we don't know how she feels.  I don't know if her head hurts, if she's seeing double, I don't know if she feels nauseous or if she had any indications leading up to the seizure.  I just have to guess. I have to do everything possible and hope that some of it helps. 

The days after her seizure have been tough.  She was tired most of the day for two days afterward, but couldn't sleep for more than two hours at a time.  I cancelled school sessions and let her rest.  She finally felt better yesterday so I took her to the park to rider her PowerWheels.  Today we went to the farm and she played on her swing and rode the Ranger.  Her neurologist will have to wait on all of her labs results but the initial tests showed nothing striking.  At this point, there is nothing different that we can or should have done, it was just a breakthrough seizure.

So, here's the thing, I have spent 30 days living in fear.  Fear that someone would carry a novel virus to Divide County and wreak havoc on Aubrey.  My fear was that her epilepsy was vulnerable, that she was vulnerable.  After the image of her seizing was burned into my brain and we once again experienced a critical health scare, I overcame the focused fear of Coronavirus.  Aubrey will always be more susceptible to viruses.  She is always going to be higher risk for whatever is going around.  While, of course, I wouldn't put her on a crowded New York subway car at the moment, I am going to let her go to therapy next week. It doesn't matter how committed I am to ensuring she completes her reading assignments, she still has epilepsy.  Once the world returns to normal and her classmates return to regular birthday parties and not virtual ones, Aubrey will still be happy to eat supper in her tent, because she is still autistic.  Just like everyone, I hope this soon passes, but even when it does, my worst fears will sometimes be a reality and if anything, I realize that is not something I can change.  It doesn't change with online school or keeping my kids out of the grocery store.  I could do everything, but it would not be enough.