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!

Let's Stop Saying the "R" Word

Beds, seizures and Target display disasters

Jackson is heading into day 27 of being seizure free!  The Sabril is working and our little boy is changing.  Friday we went to see his neurologist and he kept saying “Jackson looks so good!”  It’s true, he does.  There is definitely progress happening in his brain and the kid is finally showing us who he is without the seizures.  He is more alert, in good spirits, curious, and reaching out for everything.  Which brings me to the Target display disaster.

 When Jackson was having seizures, it seems to me now, that he was just pretty numbed up.  He wasn’t very excitable and didn’t show a lot of interest in things.  That is starting to change (thank goodness), but it has been his way of life.  Before when we were in any store he would just sit in his stroller kind of looking around.  Yesterday we went to Target and before I knew it Jackson was leaving a trail of destruction through the shoe aisle.  I stopped to try and find him some sandals for summer and as I was looking at shoes, Jackson was grabbing pair after pair and throwing them on the floor.  By the time I turned around there was quite a collection.  At first I was like “oh crap!” and I started putting the shoes back.  But then I had one of those Oprah “Aha” moments.  Aha! My son is grabbing for shoes and making a mess!  I was suddenly so happy I got tears in my eyes.  Jackson was “that kid”, the one making a mess in Target.  I couldn’t stop smiling and laughing.  And you know what?  I just left those shoes on the floor.  It was like a shrine to me and I wasn’t going to destroy his work.  As we made our way through the store, clothes were pulled off hangers, toys were pulled off shelves and I just kept smiling.  I want to take Jackson to the store every day now and seeing what he can destroy.  I feel an overwhelming sense of joy to be the parent of “that kid”. 

The fact that he is seizure free is such a relief.  But as I have mentioned before one of the side effects of this medication is permanent peripheral vision loss so his eyesight has to be examined every 3 months.  In 6 months if the medicine is still working we will have to go back to Seattle Children’s Hospital for an in-depth vision exam.  In 2 months we will have another EEG done to see what brain wave activity is happening.  At this point Kevin and I are both feeling that the vision loss may be worth the freedom from seizures.  It’s a tough decision, but Jackson making progress, learning, and developing cognitive skills is vital to his being able to live a better life.  The progress he has made this last month has just been awesome.  He is standing up and taking steps (with support), he is starting to show interest in toys, he is more interactive with people, and he has been a happy boy.  I feel like if he can make this much progress in one month of being seizure free, then great strides may be in his future.  We just have to stay on this path for a while and see what the medicine will bring us. 

Last weekend Kevin, Jackson and I drove to a little town called Royal City over by the Columbia River.  Our mission was to deliver Jackson’s brand new twin mattress to a man named Dwight.  A man we had never met and who had never met us.  Through a friend of ours, and her dad Gordon, Dwight heard about our plight for a safe bed for Jackson.  And just like that a stranger offered to build Jackson a bed.  Dwight is a retired school teacher.  He taught Shop.  Dwight and Gordon are going to work on the bed together.  It’s pretty exciting and touching.  I’m still not sure how you thank someone for something like that.  I do have to say that before the bed making offer came from Dwight and Gordon another friend of ours offered to buy the SleepSafe bed for Jackson.  Just FYI, those beds run about $5000.  I was overwhelmingly touched by that too.  But there was no way I was going to let that friend spend their hard earned money on us.  Both of the offers were excellent reminders of how well I have chosen friends over the years. 

Although Dwight and Gordon are working on Jackson’s bed, don’t think that I have given up the fight with Molina Healthcare!  It’s not so much about getting the bed now as it is the principle of the fight.  Molina first denied the bed based on the fact that we hadn’t proven the bed was the most costly or effective.  Then when we did prove it, they came back and said “Oops, what we meant to say was we just don’t buy beds.”  I don’t like my little boy getting jerked around by big, rich insurance companies.  So I am going to ask for an Administrative Hearing.  The Justice Project (attorneys) find Jackson’s case intriguing and have agreed to take a look at all the documentation and see if we have a case.  I’m still going to fight Molina until the end of the road, but Jackson is going to have a nice, safe bed soon and that is all that matters. 

Sadness

On Friday my friend Anne lost her son Matthew.  He was 29.  He was disabled.  When I talked to Anne this morning I couldn’t get over how brave she is, and has been for the last 29 years.  When Matthew was young Anne understood that his medical needs and care were too much for her and her family.  She made what I think is the bravest, and no doubt scariest, decision a mother would have to make.  Matthew went to live in a care facility.  Back then moms didn’t have the kind of resources and help we do today.  I have no doubt if Jackson was born 29 years ago we would have put him in a care facility also.  The therapies, doctors, nurses, rehabilitation facilities, State and Federal government, and health care companies all make it possible today for our children to stay at home for us to raise.  But it isn’t easy on some of these mothers.  I am pretty lucky in that Jackson doesn’t have feeding or breathing tubes, he doesn’t have a colostomy bag, he doesn’t have paralysis, and he isn’t in and out of the hospital every time he gets so much as a runny nose.  A lot of disabled children have these needs and their mothers and fathers are just barely hanging in there trying to care for them.  That is also why the divorce rate of special needs parents is outstandingly high.  Raising these special children isn’t easy and sometimes parents discover they just can’t do it.  Frankly, those parents are my heroes.  They are putting aside their own wants and needs and doing what is best for their child.  They are making the ultimate sacrifice.  Just like Anne did.  Regardless of the fact that Matthew lived in a care facility, he was loved.  He was Anne’s son and she loved him just as we all love our children.  To have a disabled child brings so much grief into your life.  A grief you kind of just end up living with.  But you also end up living with a different view of the world.  A world where little things don’t matter so much and disabled children aren’t “freaks”, they are the best teachers you’ll ever have.  They teach us that love is truly and constantly unconditional, that life can bring you sadness one minute and inexplicable joy the next, that a smile is all it takes to burst your heart open, and that patience is not just a virtue, it is a way of life.  Matthew taught Anne, and Jackson is teaching me, that being a special needs mom is the most extraordinary experience a mother can have. 

Anne’s little boy is now free from his pain and she no longer has to watch him suffer.  For that I am thankful for both of them.  But as I write this I am crying.  Just because Matthew was disabled doesn’t mean his life mattered less.  Anne isn’t grieving for her disabled son, she is grieving for her son.   Matthew’s life mattered just as much as anyone’s.  Let that be a lesson to all of us. 

Quotes

One joy scatters a hundred griefs.  ~ Chinese Proverb

I have a little notebook of quotes.  When I hear a good quote, I write it in the book.  The other day I was reading some of them and came across the one above.  It made me think of Jackson.

Some days I feel like all I do is write letters, make phone calls, and shuttle Jackson around town to school and appointments.  By the time I crawl into bed for the night I feel like a whole day has been lost.  It makes me sad sometimes.  Where are all those days filled with trips to the park, Playdoh, peek-a-boo, and coloring?  Jackson’s 3, we should be doing all those things, giggling along the way.  Instead I’m fighting insurance companies and Spokane School District, making appointments, and trying to keep my head above water.  And there’s the underlying grief that occasionally surfaces about having a different child.  But then, just like the quote, Jackson will do something.  He’ll stick his finger up my nose, bust into hysterical laughter for no apparent reason, look at me and smile, pretend he’s playing with my hand while slyly moving my finger into his mouth for a bite, and I will laugh.  I’ll feel such love and happiness for my little boy.  True joy.  The griefs will scatter and I forget all about them.  The only thing that is important is Jackson.  As it should be. 

Happy Report

It seems like most of my posts lately have been kind of downers, or at least that is how I feel when I write them.  I think it is high time for a happy report!

Jackson has now been in preschool for two weeks.  All my fears and concerns flew out the window the 4^th day of school when I picked him up and his teacher gave me two thumbs up.  He is adjusting beautifully and his teacher and aides are working hard to find out the stuff he likes and doesn’t like.  I think he actually likes school.  When we get there and I open the car door to take him out, he can hear the sounds of kids and he starts smiling and giggling and getting excited.  He is happy when I pick him up too.  It’s such a huge relief to know that he is happy and adjusting and not totally miserable.  My favorite part?  Friday when he got home from school I was unpacking his backpack and came across a paper bag with the words “To Mom” on it.  I opened it up and there were two craft/coloring projects for me for Mother’s Day.  One was Jackson’s handprint.  It made me burst into tears.  I told Kevin I want to be buried with them.  I know Mother’s all over the world are getting crafty stuff from their kids and it isn’t a big deal.  But honestly, I wondered if I ever would.  In the back of my mind somewhere I think I thought Jackson would never be able to do stuff like that.  I love, love, love it when I’m wrong!

The transition has also been good for me.  Having a couple of hours to myself every morning has really been great.  I can get the grocery shopping done without fearing a meltdown in aisle 5.  I can sit on the couch and catch up on my recorded Ellen shows with the volume at a normal level.  I can make phone calls and not have to yell into the phone over Jackson’s “talking”.  I can leisurely pick out a book at the library instead of grabbing whatever is closest to me because Jackson is making too much noise in the quiet building.  The best part is I get everything done and so when Jackson comes home I can just hang out with him and not have my “To Do” list hanging over my head.  I kind of like spending my afternoons rolling around on the floor and snuggling with my kid!

The other great news is that Jackson has been seizure free for a couple of weeks.  We started him on the new medication, Sabril, and within 5 days the seizures stopped.  I am so happy to not have to watch him seize up all the time.  I also think that is why he is doing so well in school.  He’s not irritated and worn out from the seizures.  He is able to focus and learn.  It’s great in so many ways, but the effects of this medication on his vision scares me every day.  Sabril can cause permanent peripheral vision loss.  We will have to make a decision in a couple of months about whether to stop the medicine and risk the seizures returning or keep giving him the medicine and risk the vision loss.  That decision is looming in my future and I am dreading it.  For now I am just going to enjoy my little seizure free boy and watch him learn some new stuff at school.