Vacation Potpourri

Jackson and I have been on vacation for 16 days now and have been in Florida for nearly a week.  It’s been a busy, crazy vacation and true to form Jackson has caught a cold.  It’s becoming a tradition of his to come to Florida and get sick.  Unfortunately, he tends to spread his sickness to others.  Somehow Kevin and I managed to dodge it this time but he has infected Grandpa.  So now Jackson and Grandpa are taking antibiotics in an effort to get rid of this sickness before it hits Grandma. 

We spent over a week in Colorado visiting family and friends.  We spent a lot of time in the car going from place to place and I can’t get over how amiable Jackson was.  The day we flew to Denver we got him up at 4 a.m., spent two hours on the plane (not once did he get fussy), drove an hour to get our car, drove another ½ hour to see Grandma Sandy for an hour, stopped and got cheeseburgers at McDonald’s, drove another hour to Loveland to go to the hospital to see my best friend Tami who just had heart surgery, and spent a couple of hours at the hospital before heading to Tami’s house for the night.  It was a long day and he only had about a ½ hour nap.  But throughout the day he was happy, content, and sweet.  “Who was this kid?” I kept wondering to myself.  The old, seizure prone Jackson would have been screaming on and off all day and we would have been miserable.  The seizure free Jackson was unbelievable.  This was a much better trip than I had anticipated.  It’s hard for any parent to be on their own for a week without the support of the other parent (I have no idea how single parents do it), but add traveling to 2 different states, staying at 3 different homes, and visiting lots of people with a 3 year old who doesn’t understand what is happening and your “vacation” can turn into a nerve wracking adventure.  This time though, it was anything but. 

The best part of our vacation has been seeing how our friends and family react to Jackson.  Most of them haven’t seen Jackson for 6 months to a year.  Each and every one of them couldn’t believe how long (tall) he hadn’t gotten and how different he was without seizures.  When you are with him every day you see the little changes but not the overall change so it is fun to hear others reaction and comments about his progress.  I am also reminded by our friends and family how lucky we are to have them in our lives.  No one looks at Jackson as if he is different.  No one makes negative comments.  Instead they celebrate his development and achievements.  They shower him with love and through that love they support Kevin and I in our journey as Jackson’s parents.  And though nothing is said, it is that support that keeps me going most days. 

Even though he is sick, Jackson is still pretty happy and is having a fun vacation.  He gets in the pool a few times a day, has been taking some long afternoon naps, goes to the beach every evening for a walk, gets ice cream after the beach walk, and stops at the playground by the beach to do a little swinging.  Not a bad way to spend your sick days.  Life is pretty tough down here in sunny Florida.  Somehow Jackson, Kevin and I are managing to get through the days. 

Purpose & A Bunch of Other News

As some of you may know, before Jackson was born I was a teacher.  I taught high school and I loved “my kids”.  When Jackson was born and it came time to go back to work, I just couldn’t do it.  I couldn’t imagine dropping my baby off with someone I barely knew and leaving him for the day.  So Kevin and I made some living adjustments and I became a stay-at-home mom.  At the time, I thought that I would stay home for a couple of years and then around age 2-3 Jackson could start going to a preschool to get some social skills and early learning, and I would go back to work.  Then when Jackson was 14 months old we got his diagnosis and all of the sudden I became a permanent stay-at-home mom.  I can’t say that I have adjusted to it all that well.  It was one thing to think I was just going to be home for a couple of years, and a whole different thing to realize this is now my “career”.  Don’t get me wrong, I know I am lucky to be able to stay home and being a stay-at-home mom has been the hardest job I have ever had.   I have nothing but respect for the moms who do it.  It’s just hard adjusting to the fact that this is who I am now. 

My whole life I wanted to a teacher, there wasn’t anything else I wanted to do.  While I loved it, I also got to see firsthand the political atmosphere and injustices towards our children that make up the public school system.  It’s no longer about giving our kids a stellar education, and that is extremely troubling to me.  Somewhere along the way we have lost the focus and got sidetracked with unnecessary bureaucratic crap.  (Watch the documentary “Waiting for Superman”)  So now I am not only faced with my new career as a stay-at-home mom but the new question of “What do I want to be when I grow up?”  Some days I feel a little lost.  I see my friends and family going off to work and having a purpose outside of their home and I wonder if I will be something other than Jackson’s advocate, assistant, chauffer, scheduler and cook.  Maybe I am just feeling sorry for myself.  Jackson certainly is the most important thing in my life and I love being his mommy and fighting for him.  I can definitely add a slew of new skills to my resume from the last 3 years!  There’s just so much more I want to do.  I really want to work with parents of special needs kiddos.  I want to teach them what I have learned and help them maneuver the healthcare and education systems.  I want to be an advocate for them.  But I barely have enough time to do that for myself and I wonder if I will ever get to help others.  Having a future life outside of the home seems like a impossibility right now but I suppose some day it won’t.  Another test of patience I guess. 

A few months ago I read Senator Edward M. Kennedy’s autobiography.  I guess if I follow his advice, I will get to where I want to be someday.  Here is what he had to say:     

“This is the greatest lesson a child can learn.  It is the greatest lesson anyone can learn.  It has been the greatest lesson I have learned: if you persevere, stick with it, work at it, you have a real opportunity to achieve something.  Sure, there will be storms along the way.  And you might not reach your goal right away.  But if you do your best and keep a true compass, you’ll get there.”

The battle for Jackson to get ESY services (extended school year, i.e. summer school) is over.  Another victory for my little boy!  Jackson will go to summer school starting in July for 4 weeks, 2 days a week, 5 hours a day.  It is a little more intensive than his regular school year services and I’m not sure how he will do with those long days.  This is his last week at his regular school.  As a former teacher I can feel the anticipation when I walk in his school.  All those teachers saying to themselves “Just one more week.  I can do it!  The end is in sight”.  I feel their excitement for summer break.  But for the first time I am a parent of a child in school and I am thinking “Bummer, just one more week!”  I have to admit I have become accustomed to having a couple of hours to myself in the morning.  In fact, as I write this post I am sitting in the Rockwood Bakery by Manito Park drinking hot chocolate and eating a lemon cupcake.  Yup, very accustomed. I know I will have summer school time in a month and that will be nice too, but until then I am sure going to miss my little neighborhood bakery “me” time.  

Saturday Jackson and I leave for vacation.  We will spend 9 days in Colorado and Wyoming visiting friends and family.  Then Kevin will join us for a couple of days and we will all fly to Florida for two weeks.  Spring has barely arrived in Spokane, let alone summer.  So I am anxious to get to the beautiful beaches in Florida and ride some waves in the warm ocean.  Kevin’s family is having a reunion this summer so it should be a fun time in Florida.  Jackson loves the beach and the ocean so I can’t wait to get him there.  With Jackson still being seizure free, and more curious than ever, I think we are going to have some battles at the beach.  Mainly, Jackson’s insatiable desire to put everything in his mouth.  I envision a lot of digested sand filled diapers in his future!