Too Many Angels

I can’t seem to stay quiet about the shootings in Newtown.  It’s weighed heavily on my heart since I first heard about it when we got off the plane in Florida.  Every day I watch the news and see the faces of those children.  I love to hear about them and the lives they had.  How innocent and simple their lives were.  I love Emilie’s blue eyes.  Daniel’s missing two front teeth.  Jessica’s love of Orca whales.  Jack’s love of the NY Giants.  Catherine’s red hair.  How Chase completed his first triathlon at age 6.  How Ana never walked, she danced.  Their stories make me smile and cry.  I’ve cried every day for them since they were murdered.  I cry for their parents.  I hope I never know what their loss is like.  I wish there was something I could do to bear some of their grief for them.  It seems an impossible load for someone to carry. 

I am going to say something that some might find offensive but I am still going to say it.  I am mad at the shooters Mom.  Really, really mad.  Here is why.  That mother knew her child was mentally unstable.  I have no doubt she tried to find an outlet that would help her child.  She foolishly thought the solution was to teach him how to use guns.  A friend of hers told the press that she wanted him to know how to be safe with guns.  Why?  Why would she even have guns in a home with a child who has mental instability?  As a mother of a child with special needs I can assure you I will never have guns in my home.  It would be ludicrous.  I don’t know what Jackson is going to be like when he is 20.  Hell, I don’t even know what Jackson is going to be like in a year.  But because he is a child who may or may not fully understand his actions and behavior, I would never risk having a dangerous weapon in my home.  For his own safety, and for others.  This woman had an arsenal of weapons.  What was she thinking?  Why?  I just don’t get it.  To me, regardless of the difficulty and grief she faced over her son’s condition (whatever that may be), she was irresponsible.  That irresponsibility not only cost her her own life, but the lives of 26 innocent people. 

Meanwhile, I hear all these debates on the news channels about gun control.  I see posts on Facebook about what my friends think should be done.  Here’s my two cents.  I grew up around guns.  My Dad had a shotgun, he was a hunter.  He even used to have a machine that loaded his shells and I would help him.  He also had a handgun in his nightstand next to his bed.  I had a BB gun when I was little and my Dad and I would shoot cans and trees.  We would go skeet shooting.  I never particularly cared for any of it, but my Dad liked to do it and I liked to hang out with my Dad.  Having said that, I feel we need to get weapons of war off the streets.  Why does anyone need a semi-automatic weapon?  Why does anyone need guns with high capacity magazines?  No one does.  No one NEEDS it.  They may want it, but they don’t need it.  I’m all for people owning their guns, but there needs to be some kind of control on what kind of guns people can own.  I know some of you may feel like you should be able to own any gun you want.  That’s a valid point.  But is your right to own a weapon of war more important than the lives of 20 children?  I don’t think it is.  As far as letting teachers carry guns, that idea makes me sick to my stomach.  As a former teacher I would never want a gun in my school.  What happens if a teacher hears something she thinks is gunfire?  She hides her children in the classroom, looks down the hall and fires at the first thing coming around the corner.  What if that thing coming around the corner was a child?  She just killed a child.  You hear stories like that all the time.  Just a couple of months ago a father shot his son when he came home late at night because he thought he was an intruder.  Besides, in my opinion, countering violence with violence is not a solution.  That age old saying “Guns don’t kill people, people kill people” is ignorance in my opinion.  I can guarantee you if the Newtown shooter walked into the school carrying a knife 20 mothers and fathers wouldn’t be burying their babies this week.  Their babies wouldn’t have died with anywhere between 2-11 bullets in their body.  Those guns killed those children and the adults who tried to save them.  Most importantly, our attitude towards people with mental disabilities needs to change.  These shooters tend to share a common trait, they had some kind of mental instability.  Why didn’t they have better access to care?  Why do these people fall through the cracks?  Where are the services they need to stay safe and cared for?  Maybe if the NRA stopped spending millions on lobbying politicians and spent their money on lobbying for mental health care we would have a safer country.  The problem is overwhelming and contentious. 

For now, I will stop what I am doing every time I hear a story of one of the Newtown victims on TV or read one in the paper.  I will listen to what their life was like and how much they meant to those who loved them.  I will cry for their lost life.  Then I will give Jackson a hug, a big hug, and thank him for bringing me so much joy.  I will treasure what I have.  Something we should all be doing, every day. 

Not Enough Time In The Day

I was surprised when I looked at my blog yesterday and realized that I hadn’t posted in nearly 3 weeks.  I didn’t realize time had gone that fast!  Lately, it seems I have had about 10 balls up in the air at any given time.  Unfortunately I am one of those anal people who makes my daily list of things to do and can’t rest until everything is checked off.  Therefore leaving me no time to just sit and do something I want to do, like write on the blog.  Finally this week I wrote down on my to do list “Blog!”  I know, pathetic.  So what has been keeping me busy the last 3 weeks?  Where do I begin….

Let’s start with the kid, Jackson.  We’ve continued to do the Anat Baniel and Feldenkrais sessions and Jackson is doing beautifully.  He just seems more aware of his body, where he is, and what is going on.  It’s been fun to see the small, but significant, changes.  This is the last week of his horseback riding for a couple of months.  It’s too cold here in Spokane to go year round so we will start back up at the end of February.  The last couple of times he rode he rode with a saddle.  He’s only rode bare back before so it was fun to see him in a saddle with stirrups.  He looked like a tiny cowboy!  Usually when he gets tired when riding he will lay back or lay forward to rest.  Unfortunately for him, the saddle won’t allow him to do that.  The first time he tried to lay down he let out a few protests, but then gave up.  The second time he did great with it.  It will be interesting to see how he does after a couple of months off.  Jackson has also been doing aquatic therapy and he loves that.  All these therapies and a few doctor appointments here and there keep me going, going, and going. 

One good thing in the last couple of weeks is that we finally found a respite caregiver.  After numerous caregivers coming and going, we finally found one who liked Jackson and we liked.  I didn’t realize until we didn’t have a caregiver what a break it gave me.  Having time to myself is a precious commodity and just having the ability to go to the grocery store and shop by myself is a treat.  Plus having someone carry Jackson around for a few hours a week really gives my back a break.  Needless to say I’ve been in a lot of back pain the last month.  At 45 pounds the kid is a load to carry!  It always takes me a few weeks to get used to having someone take care of Jackson, and to trust them so I can leave the house.  I am looking forward to being able to catch up on all the stuff I haven’t had time for lately, and to get back to writing on my blog regularly again.

A couple of weeks ago Jackson went to a birthday party of a classmate.  It was the first time Jackson had been invited to a party from one of his friends at school.  He loved it.  So did I.  The party was in this little local ice cream/deli shop and they had grilled cheese sandwiches, ice cream and cake popsicles.  Who doesn’t love all those foods?  Plus Jackson’s best girlfriend from last year was there.  Abigail moved schools this year so we haven’t seen her.  Jackson saw her and a big smile broke out.  She ran over and gave him a kiss.  It was adorable.  Last year, every morning Abigail would run over to Jackson and say “Good morning sweetheart!”  Then she would give him a kiss on his cheek.  It was so freaking cute!  It made my heart melt every time.  So for him to see his Abigail again was such a treat.  Plus for me it was a great feeling to know that Jackson has friends.  I worry so much about that.  I want my little boy to have friends and people in his life outside of our home and family.  I love that he does. 

For me the last few weeks have been busy with advocating.  I’ve been aware of how the special education preschool parents have been kind of left out of the elementary school activities that the Parent Teacher Group (PTG) puts on.  That bothers me.  I noticed it last year and just kind of kept my mouth shut.  But this year I decided it bothered me enough to do something about it.  I finally met with the PTG President and I also went and spoke with the Principal.  They were both wonderfully receptive and don’t want the special education parents to be secluded or left out.  Tonight I will go to my first PTG meeting and on the agenda is how to include the special education parents.  I am excited, and a little anxious, to see how the other parents react to more inclusive activities.  The thing to remember, for anyone who reads this whether you have a special needs child or a neurotypical child, is that we are parents too.  We love our children and want them to be part of their school community.  We want them to have friends.  We want them to have fun.  We want them to enjoy their childhood.  We want them to learn.  We aren’t different in those regards.  Our lives as parents take on a different role than most parents, but in the end we are parents.  And our children are simply that, children. 

Perhaps the most time consuming item in the last few weeks has been my advocacy class.  Last week I went to Olympia (our State Capitol) for 3 days to learn how to advocate for those with disabilities.  Before I left I had to prepare testimony and meet with one of my legislators.  So I met with my district Representative Kevin Parker.  It was a great opportunity to talk to him about the Affordable Health Care Act (Obamacare) and how it was going to affect families.  We also spoke about education and in particular special education funding.  It was a fantastic conversation and I loved hearing his perspective and how these issues will be included in the legislative session next year.  I had never been to Olympia and I had never seen our Capitol Building.  It was magnificent.  We got to spend a day in the Capitol Building and we held a mock hearing where we had to testify about an issue that was important to us.  I testified on how day cares/preschools reject children like Jackson despite the American with Disabilities Act clearly stating they legally can’t.  I used my testimony to ask the legislature to create and pass laws that would give clear and concise guidelines for these institutions to follow when accepting/denying children with disabilities.  Even though it was a mock hearing, it motivated me substantially.  I hope I do get to stand up in front of our Senate or House someday and testify on behalf of Jackson and others with disabilities.  Heck, maybe someday I will be sitting in one of the Senate or House seats hearing testimony from others.  I think Senator Klim has a nice ring to it.

Next week we are headed to the sunny state of Florida for a couple of weeks.  We are going to spend Christmas with the best parents, in-laws and grandparents in the world.  I can’t wait to see them!  Jackson is in love with the ocean (so am I) and we take nightly walks on the beach with him.  Jackson’s face just lights up when he sees the ocean.  I think he likes the sounds, the breeze and the peacefulness.  Christmas always brings Kevin’s 4 cousins and their families (the Dixon’s) to town too so it is a great fun time and I love hanging out with the Dixon women!  I am looking forward to a little down time and lots of family time.  There’s nothing like Christmas with family to recharge the batteries!

Credo for Support

I saw this video in my Advocacy Leadership class and just wanted to share it.  I think a lot of people out there only see a person with disabilities.  They forget, or just don't understand, that we are all human and want things for ourselves.  People with disabilities just want to be treated with respect, decency and understanding.  They also want to accomplish things in their lives, just like those of us without disabilities.  They want a job, a home, friends, and independence.  Watch and begin to understand. 

http://www.youtube.com/watch?v=SKCxwDF-SrI&feature=em-share_video_user

Progress and Loss

I have no idea where the last couple of weeks have gone.  Well, now that I think about it I actually do.  Jackson has been a demanding supervisor and requiring a lot of my time.

For almost a year we had the same respite care giver taking care of Jackson.  While she took care of Jackson I was actually able to catch up on errands, go to the bakery to work on my blog, go to my doctor appointments, you name it.  Unfortunately she left us a couple of weeks ago and we haven’t been able to find another one that we like and/or likes us.  So there went my free time.  And my energy level.  Hopefully we will find someone soon so I can get caught up on life and some sleep!

In the meantime, Jackson has been a busy little boy.  Lots of therapy sessions, 6 month follow up doctor appointments, and school.  This week he went to the dentist and for the first time they were able to clean his teeth.  They didn’t get to clean the backs of his teeth but they got the front and that was pretty amazing.  It was a start and I will take it.  He decided he liked the suction tube that sucks the water out of your mouth.  He kept trying to get it with his tongue which was quite hilarious.  I figure if we try a little every time we go then hopefully someday he will be used to it and dental appointments won’t be traumatic, for any of us! 

As I mentioned a couple of posts ago we are trying to some new, “alternative” therapies with Jackson.  They are called Feldenkrais and Anat Baniel.  In October we did Feldenkrais.  This month we are doing Anat Baniel.  Instead of going once a week we do sessions.  Jackson will have therapy every day for 3-5 days and then have a week or so off.  When we started I was hopeful that these therapies would help Jackson, but I was also skeptical.  Only because I have a love/hate relationship with hope and I don’t like to get my hopes up and then have them crushed like a garlic clove.  But after a month or so of therapy I can say we are seeing some progress!  No miracles or anything, but progress in the form of achievement for Jackson.  It’s little things like playing with his feet.  That is actually a milestone most babies meet, discovering and playing with their feet.  Jackson is just now realizing they are there and he is playing with them.  He is sitting up straighter.  His legs aren’t as tight and stiff as they have been traditionally.  He is reaching for things more.  He is becoming some kind of contortionist with his body.  He gets all tangled up and then plops over to get untangled.  That one is actually pretty entertaining to watch.  Twice he has sat up on his left side (his weak side).  A couple of times he has actually gotten into a crawling position with both arms up.  He isn’t there long but the fact that he is able to put pressure on his left arm is amazing.  In general, the kid just seems different.  It’s amazing to see. 

I don’t ever want to underestimate what Jackson is able to do.  But I think that as a parent of a special needs child we sometimes are forced to look at what our children can’t do.  Doctors will ask “Can he do this?  Can he do that?”  And you have to face your child’s inabilities.  Hardly anyone ever asks “What can Jackson do?”  So you find yourself focusing on the negative, instead of the positive.  Ultimately leading you to a place that is without a positive outlook.  I think that is where I have been for a while because the traditional occupational and physical therapy hasn’t helped Jackson progress very much.  Now I am seeing how much Jackson is capable of and it is exciting!  I realize now how important it is to try new things, take a leap of faith, and seek out new opportunities for Jackson.  Giving him the best chance of success is the most important gift I can give him.  Oh how I love giving gifts!

The "R" Word

As many of you probably know, after the presidential debate earlier this week Ann Coulter tweeted out that she approved of "Romney's decision to be kind and gentle to the retard."  I can’t really explain to you in words how this tweet made me feel.  My heart sank a little, I had trouble comprehending her words because I can’t fathom someone being so ignorant and insensitive, and then I got so mad my hands started shaking.  All I could think about was that awful July afternoon when Kevin and I sat in the doctor’s office and listened as we were told that Jackson would more than likely have some form of mental retardation.  Unless you’ve heard those words describe your child, you cannot fully grasp the severity of devastation the “R” word brings to your life.  My hatred for that word is so deep I can literally feel it in my bones. 

When I look at my son I see a beautiful, funny, silly little boy.  Granted, after 4 years the kid is still a mystery to me.  I know he understands more than he lets on, but to what extent I don’t know.  He has different cries/yells for different things (pain, uncomfortable, bored, tired, etc.) that I am able to decipher.  But if it is his pain cry I am often at a loss as to what is hurting him.  He may not be able to walk but he knows how to get to where he wants to go.  He rolls, sits up, turns around and ultimately reaches his destination and sometimes ends up in a place he didn’t even know he wanted to go to.  Jackson just has a different way of doing things and that surely doesn’t make him less of a person.  By no means does any of this make him a retard.  To imply so would be saying that he isn’t worthy of respect, fair treatment, and decency.  Things he deserves just like any other child. 

Last month I started a 7 month long class on how to become a better advocate for disabled persons.  I am taking this class because I not only want to be the best advocate I can be for my son, but also because I want to work with parents of special needs children someday.  I want to help other parents navigate the journey I am on.  Our first weekend of class we talked about something called People First Language.  The premise is to ensure inclusion, freedom, and respect for all we must use language that doesn’t reinforce attitudinal barriers.  For example, instead of saying the handicapped or disabled we should be saying people with disabilities or instead of saying he/she is mentally retarded say he/she has a cognitive disability.  When we talked about this in class I kind of thought it was a no brainer, but then as we did more examples of words to use I realized that even I used words that weren’t people first friendly.  What I realized is that our language system has changed over the years.  Words that were once commonplace, are now socially unacceptable.  Quite frankly I believe that is a good thing.  My best friend is a beautiful black woman, I would never, ever, call her a nigger.  Kevin’s best friend is gay, I would never, ever call him a fag.  Just writing these words bother me profusely.  Jackson has taught me that we are all just human beings.  We are not black, white, blond, brown eyed, tall or short.  We are just human beings.  We don’t need to separate one group of people from another.  And we surely do not need to attach hurtful words to describe one group of people from another. 

A part of me (the emotional part) wants to hunt Ann Coulter down, kick her in the shin and punch her in the face, hopefully breaking her nose.  I really, really do.  The more logical side of me would like her to meet Jackson.  Let her see what a cute, cool kid he is.  Then ask her to call him a retard to his face.  If she did it then we would know that she is really an evil person with no heart or conscience.  If she couldn’t do it, then maybe we could change the way she views others and uses her words.  In the meantime, I ask all of you to think about the words you use to describe others.  Think of some of the hurtful words we have used over the years.  Then make a conscious effort to change. Most of all, spread the word that the “R” word just isn’t okay.  If someone says it, tell them about Jackson.  Make them realize that the word is not necessary and there are other words that can be used.  We are able capable of making a difference.  Jackson has made a difference and touched so many lives.  If a 4 year old can do it, then you can too. 

Visit http://www.r-word.org/ and like them on Facebook.  Then ask your friends to do it too!  The more we spread the word, the more we can end the word!

 

“Everyone thinks of changing the world, but no one thinks of changing himself.”  Leo Tolstoy

The Wheelchair

Jackson has had his wheelchair for about a month now.  It is much better than any of the strollers we have used over the last couple of years.  It fits him well, he is sitting up straight, and his legs aren’t flailing around.  It’s just a better support system for him.  I am glad that we finally got it.  Having said that, I’ll admit when we picked up the wheelchair and I saw Jackson in it for the first time it was a little shocking to me.  I suppose no Mother is ever prepared to see her little child be confined to a wheelchair.  It broke my heart a little.  But my heartstrings aren’t as important as Jackson being able to get around though so I just had to stop thinking that way and be thankful that we were able to get him a wheelchair.  However, it has taken some time for me to get used to the looks we get now when we are out and about.   

The day we got the wheelchair I took Jackson to Costco to get lunch.  As we strolled into the store I became acutely aware of all the looks we were getting.  It was probably mostly me feeling a little shocked about the whole thing, but there was definitely some looks.  A few were the “What is wrong with that kid” look.  A few were “Oh that poor child and mother” look.  A few were just your regular smiles to greet someone.  Most importantly I got a couple “He is so cute!” comments.  As we sat down to eat I was feeling a little shaky about it.  Then my neighbors saw us and came over to say hi.  I told them we just got the wheelchair and were getting some looks.  Their response was “Who cares?”  They were right.  Who cares?  It was perfect timing to remind me that Jackson is the one that matters, not the strangers who we pass by. 

A few days later Jackson and I were in Kohl’s returning an item.  As we stood in line at the Customer Service desk a little girl, who was probably about 5 years old, and her grandma walked by.  I heard her say to her grandma in a sad little voice “Oh look he doesn’t have legs.”  The grandma quickly told her to be quiet and started to walk away.  For a brief moment I thought about just letting them go, but then I thought I should say something, anything that would give Jackson a voice to be heard and maybe understood.  So I said “He has legs, see?  He just doesn’t know how to use them.”  They stopped and looked at Jackson.  The little girl asked me “Why?”  I told her Jackson was born with a bad brain and so not all of his body could move right.  She tilted her head and gave me perhaps the saddest look I have ever seen from a child.  Then she asked “Will he be okay?”  I said “Yes, he will be okay.  He is happy, loves ice cream and doesn’t care if he legs don’t work right.”  She smiled at Jackson and the grandma smiled at me and they were gone.  I don’t know if that little exchange will have an effect on a 5 year old but it did on me.  It felt really good to let someone know that Jackson is a person too even though he is in a wheelchair.  He’s just a kid who gets around on wheels instead of legs. 

I recently saw a quote that is another motto I need to adopt.  “Life is 10% what happens to us and 90% how we react to it.”  (Charles Swindoll)  That pesky 90% is what sends me into tailspins of sorrow, anger and questioning.  I need to stop reacting to all of these little life events with Jackson and just start living my life with Jackson.  Lately, I feel like I am getting that message.  It’s a journey I will probably be on for a long time.  Lucky for me I have the best little companion to keep me company.  Jackson. 

Trying New Things

Jackson has been doing occupational (OT), physical (PT) and speech (ST) therapy since he was 14 months old.  It has become a way of life for us.  I believe on a foundational level all of this therapy has helped him in some way.  However, since having a kid like Jackson I have learned to think outside of the box, which is scary and difficult for me sometimes.  For example, I have always been a firm believer of medicine.  Doctors and experts have spent years creating medicine that will help “heal” our ailments.  But after trying numerous seizure medications on Jackson, and seeing some unpleasant side effects, I started thinking alternatively.  I found that our FDA approved medications may not be the only answer.  Since then I have viewed “alternative” forms of medication and therapy differently.  This has been a huge step for me and liberating at the same time.  To consider all possibilities and view new ideas with an open mind has helped me grow as a person and has made me a better Mom to Jackson. 

About a year ago I heard of a therapy called Feldenkrais on one of the online communities I belong to.  After doing some research online I thought it sounded interesting and looked for a local practitioner.  There was one here in Spokane so I emailed her.  After finding out our insurance wouldn’t cover this alternative kind of therapy I had to put it off since we were already paying out of pocket for Jackson’s horse therapy.  I put it on my “wish list” for Jackson.  Then something really big happened.  Jackson sat up by himself for the first time.  He had been riding horses for less than a month when this happened.  Seeing the change in Jackson’s capabilities after riding horses made me realize that we need to try different things with him.  Feldenkrais was always in the back of my mind, I desperately wanted to try it with Jackson.  Then in July I started reading a book called “Kids Beyond Limits” by Anat Baniel who was a student of Feldenkrais.  It is an amazing book and cemented my belief that we need to try different things with Jackson.  I found an Anat Baniel practitioner here in Spokane and added another item to Jackson’s wish list.  In the meantime my stepmom Sandy passed away and we found out we were going to get some money from her and Dad’s estate.  Suddenly Feldenkrais and Anat Baniel Method (commonly referred to as ABM) became a possibility for Jackson.  I am so thankful to my parents.  I would much prefer to have them here, but it touches my heart immensely that they are making this possible for their grandson.  I wish I could thank them and let them know how much it means to us.   

Last month I contacted the Feldenkrais practitioner and we met with her.  Ironically she had heard about the Anat Baniel practitioner too and had invited her to our appointment.  Both felt Jackson was a good candidate for their therapies.  We were really impressed with the methodology behind their therapy and felt like this was definitely something we wanted to explore for Jackson.  We had a couple more sessions with the Feldenkrais practitioner and then had one session with the Anat Baniel practitioner.  Next month we will do some more intensive work with them.  I am excited to see if these therapies will help Jackson progress.  I am hoping it helps him on some level that will be beneficial to his growth but I also don’t want to get my hopes up (continuing issues with my nemesis “hope”). 

One condition to trying these treatments is that they ask that the patient cease their PT and OT therapies.  The method and technique they use is contradictory to the traditional PT and OT method.  Jackson will have a better chance at benefiting from Feldenkrais and ABM if he is no longer doing PT and OT.  Making the call to cancel his PT/OT therapies for an undetermined amount of time was really scary to me.  I am so accustomed to this being Jackson’s life and his future depending on these therapies that it literally made me sick to my stomach to stop them.  I felt like I was jumping off a bridge and plunging into who knows what.  I guess that is what we are doing.  We don’t know if this therapy will help him, hurt him or have no effect at all.  As frightening as it may be, I think it is what we need to do for Jackson right now.  It’s a risk, but one worth taking.  As Arthur C. Clarke once said “The limits of the possible can only be defined by going beyond them into the possible.”  Here we go into the possible.

P.S.  Jackson will continue riding horses (hippotherapy) and yesterday he started aquatic therapy at a new facility.  These therapies tend to be less traditional and will benefit him while doing the Feldenkrais and ABM. 

If you are interested in learning more about the Feldenkrais and Anat Baniel Method, here are links to their websites:

Feldenkrais - http://www.feldenkrais.com/

Anat Baniel - http://www.anatbanielmethod.com/

Hole In The World

I didn’t think about the date this morning when I woke up.  I was thinking about the fact that today Jackson was getting his wheelchair.  I’ve had some mixed emotions about that.  On one hand I was excited for him to have a wheelchair.  It will definitely make transporting him easier and more efficient.  I absolutely hate the stroller we have and he doesn’t seem well supported in it.  The wheelchair will also be great for his classroom accessibility.  On the other hand, my son will have a wheelchair.  It will make him stand out as “different”.  The term itself, “wheelchair”, indicates disability to me and I don’t like to think of Jackson as disabled.  In the end we need it and it will be good for Jackson.  So off we went to pick it up.  After adjusting it to fit Jackson and loading it in the car the salesman handed me paperwork to sign and date.  When I went to write the date, I realized what day it was.  September 11^th.  My heart sank a little bit when I wrote the date.  Memories came flooding back and suddenly I felt great sadness for the families who lost a loved one that day.  I looked at Jackson and thought of all the children who lost a parent that day.  As a mother I thought of all the parents who lost a child.  I got in my car and took a few minutes to silently reflect on all of that.  Then I plugged in my iPod and found the song I needed to listen to.  It was a song by the Eagles titled “Hole in the World”.  “Hole in the World” was actually set to be recorded on September 11^th in their studio.  But before they got to the studio the events of 9/11 had begun.  The band waited a couple of days to record it and the song took on a whole new meaning.  The lyrics “There’s a hole in the world tonight.  There’s a cloud of fear and sorrow.”  pretty much sums up 9/11. 

I can’t quite put into words what that day was like for me, I don’t know that anyone can.  The life we knew as free Americans changed that day.  In a way it made us more human.  Up to that point I think we Americans kind of felt invincible.  Nothing could touch us.  We are born free to roam our vast, gorgeous country.  We have laws to obey but we aren’t terribly restricted and we have rights.  Our country is a powerful nation.  Then we were attacked.  Thousands of our own were senselessly murdered.  And it shook us.  Really, really shook us.  I remember watching the first tower fall.  I cry as I write this because I still feel the fear, shock, devastation, and disbelief I felt when that tower fell.  My only thought at the moment was “How many people were in that building?”  We couldn’t see the people in the building, but we watched them die.  Then the second tower fell.  It was almost too much.  Then the images of the Pentagon began to appear on television.  Reports of Flight 93 crashing in a field were broadcast.  What was happening?  All of the sudden we went from free Americans to trapped Americans under attack.  What was next?  My co-workers and I spent the day watching TV, we didn’t work, the phones at the office didn’t ring.  We were glued to the TV watching the most horrendous images we ever saw.  We spent the next week or so glued to the TV watching what was happening on the other side of our country, all the while feeling utterly helpless.  Kevin and I talked about driving out to New York to see what we could do to help the workers at the World Trade Center.  But I couldn’t get off work.  Now I wish I had gone.  My heart was back east, I wanted to be there to help in any way I could.

Slowly our country started to move on.  We were a prideful nation, our flags came out en mass.  Everywhere you went you saw the American flag.  I wish they were still out like that.  I wish our country could come together again like that.  America is definitely different than it was before 9/11.  Security is more of an issue.  We have all these new rules for flying and going over the border.  It’s an inconvenience for sure but if it helps stop another attack then I am for it.  Whether or not we are stronger, I don’t know.  In a way I think 9/11 divided us.  We began attacking our own based on their Muslim religion.  Many opposed our government’s new security measures and felt their rights were being violated.  Our soldiers were sent off to fight in a war many of us did not agree with.  Things changed in our country.  Some for the better, some for the worse.

A few years ago Kevin and I went back east to visit his family.  We went into New York City for a few days.  We visited Ground Zero.  At the time it was still a concrete hole.  I had never seen the towers, Kevin had.  I was in awe of the size of the site.  It made me very sad to be there, to imagine all those who had lost their life that day.  You could still see damage to buildings surrounding the site.  I remember thinking that if someone I knew had died that day having to visit this concrete hole would make my grief even worse.  It was barren, scarred and cold.  Since then the Memorial Park has been created and towers surrounding the site are being built.  I hope to someday go back to New York and visit this beautiful park.  I hope it brings some sense of peace to the families of the victims.  As for the rest of us I hope everyone takes a minute to silently reflect on all the lives that were lost that day, the families left behind, and the pride we should have in being Americans.

Back to School!

Jackson started school today subsequently ending the longest summer of my life.  I’ve never really been a religious person and since getting Jackson’s diagnosis I think it is fair to say that I am not a big fan of the “God” everyone prays to.  However, as I drove away after dropping Jackson off at school I screamed inside my head “Thank God!  Hallelujah!  Amen!”  I am so happy Jackson is back in school.  Spending the summer trying to entertain him every day was exhausting for me and I am sure for him.  We had some fun times and did a lot of things, but I am relieved he is finally back in school where he loves to be.  Although, I didn’t even make it home (15 minutes away) before I started missing him. 

Jackson seemed to recognize where he was this morning when we dropped him off.  He was happy and smiling when his teacher came over to him.  He was still smiling when we left him and in fact didn’t even seem to notice that Mama and Papa were leaving.  When I picked him up his teacher said he had a great day and she was amazed at all the progress he made over the summer.  She was especially impressed with his sitting up all by himself.  It is fun to hear comments like that from others on how he is progressing.  Sometimes when you are with your child every day you don’t always see the things that others see.  So here’s to another great school year for Jackson.  Yay for school! 

So finally a morning all to myself.  I know you are all wondering what I did with my free 2 hours.  Let me tell you, it was fun stuff.  Unloaded the dishwasher, reloaded the dishwasher, clean both the bathrooms, vacuumed, swept the floor, cleaned the cat box, and made about 6 phone calls.  Tedious work for some but for me it was bliss being alone in the house getting stuff done.  Again, yay for school!

Saying Goodbye

“The purpose of morality is to teach you, not to suffer and die, but to enjoy yourself and live.”  - Ayn Rand

The day after we got home from Seattle we jumped on a plane and headed to Denver to say our final goodbyes to my stepmom Sandy who lost her battle with ALS/Lou Gehrig’s disease in June.  Sandy didn’t really want any type of service but for those of us left behind I think we needed it.  We needed to say goodbye to her and honor her life so we could have some closure.  I was dreading our trip to Denver.  I just didn’t want to go.  I didn’t want to say goodbye and I didn’t want to think about it.  But I’m not 5 anymore so stomping my feet and pouting while yelling “I don’t want to!” just doesn’t work for me anymore.  I had to get on that plane.  So off we flew back to my home state of Colorado.  We had a very nice service for her and I was able to deliver a eulogy.  The next day my family and I headed back to my hometown of Grand Lake, Colorado to spread her ashes.  Now that all is said and done I am glad we did it.  I finally feel like I have said goodbye to Sandy and that I can move on living my life in a world without any parents.  I am glad she is no longer suffering in the shell of a body she couldn’t control.  I feel a sense of peace when I think of her and Dad being reunited.  I miss her, I miss my Dad and I miss my Mom.  I think we all know that at some point in our lives we will lose our parents, it’s supposed to be the natural order of things.  But I don’t think we are ever really ready for it when it happens.  I feel too young to have lost all my parents.  I feel robbed of about 20 years.  I feel a huge emptiness in my world now.  I am sure it will always be like that.  Goodbyes are never easy, but whether we like it or not, sometimes our best relationships end with a goodbye.   

Here is the text of my eulogy to Sandy: 

I was 12 when my Dad married Sandy.  The truth was I was not too happy about having a step-mom.  My Dad and I had been on our own for 5 years and as far as I was concerned, we were just fine.  But Sandy didn’t seem so bad, and it made my Dad happy to have a wife.

Last summer one of Sandy’s sisters commented to Sandy and I about how close we had always been.  Sandy and I turned to each other and laughed.  It wasn’t always that way.  We had a tough time getting along.  I was jealous of her, she was jealous of me.  Dad was stuck between two fighting girls.  Somehow we managed through and in the end Sandy and I were close.  She was my Mom. 

When I think back to my nearly 30 year relationship with Sandy I realize she gave me a lot of things.  There’s not enough time to talk about all of them but I want to mention a couple.

The best thing Sandy gave me was a family.  Even though my Dad and I were just fine on our own, we were lonely.  It’s hard to celebrate major holidays when it is just two of you.  There wasn’t a lot of celebration.  Then Dad married Sandy and we inherited the Leonard clan.  The crazy pyramid building Leonard clan.  I’ll never forget my first Thanksgiving down in Monte Vista with Sandy’s family.  To go from 2 people to like 20 was quite a welcome change.  There was lots of laughter, love and liquor.  It made me so happy, and I know it made Dad happy too, to finally have a family.  The Leonard family became my family thanks to Sandy.  For that, I will be forever grateful to her.

Another thing Sandy gave me was food.  Yes I said food.  No one will ever understand the horror of my Dad’s cooking.  I was so happy to finally have food that didn’t come in an aluminum tray or from a restaurant.  Sandy was a great cook.  My Dad and I were in food heaven every time we sat down at the table.  I can only remember one time that Sandy made something that wasn’t edible.  She used to make these wonderful chewy, chocolate brownies.  I would always ask her to make them for any gathering we had.  This one particular time my sister was having a party and Sandy made her famous brownies.  I of course had to cut the brownies and have one right away.  I took a bite and nearly threw up.  Turns out Sandy used salt instead of sugar!  How you get those two mixed up I don’t know.  Sandy in her typical fashion threw her hands up in the air, shrugged her shoulders and laughed. 

Perhaps the most important thing Sandy gave me was a Mom.  She was there every day for me.   She cooked for me.  She shopped for me.  She gave me advice.  She encouraged me.  Sandy did all those “mom” things for me.  I didn’t realize until I left home for college how important Sandy had been in raising me.  Who I am today is a reflection of not only my Dad, but Sandy.  The day Jackson was born Dad and Sandy were there in the hospital.  They were there when we brought Jackson home from the hospital.  And they both never faltered when we got the horrible news that Jackson wasn’t going to be who we thought he would be.  Sandy said to me afterward that it didn’t matter, that she would still love Jackson with all her heart.  And she did.  Just like a supportive Mom and Grandma would. 

If you knew my Dad and Sandy you knew that their MO was arguing and bantering back and forth.  When Sandy started showing signs of slurring her words we were all concerned.  My Dad kept telling her there was something wrong with her and Sandy would yell at him that she was fine.  They were quite entertaining right before my Dad died because my Dad couldn’t hear and Sandy couldn’t speak clearly.  My Dad would yell “I can’t understand a damn thing you are saying woman” and Sandy would yell back “You would if you would wear your hearing aids we spent a fortune on”.   Then Sandy would break out in her repeated and memorized lecture about how much money they spent on the hearing aids and how Dad wouldn’t even wear the damn things.  When Mike called to tell me Sandy was gone I cried for a long time.  But then I had this vision of them reuniting in heaven, or wherever it is we go when we die.  It goes like this:  Dad’s standing there waiting for her, Sandy arrives, they hug and Dad says “I’ve missed you Honey”, Sandy says “I’ve missed you too”.  He puts his arm around her and they start to walk.  Then Dad in his insatiable desire to be right all the time says in his Mr. Know it all voice “I told you something was wrong with you.”  Sandy stops and hits him on the arm and says “Oh shut up Darwin!”  And just like that things are right back to the way they should be. 

Hospital Rant!

Last week we headed over to Seattle Children’s Hospital for Jackson’s 6 month eye exam.  Because of the seizure medication he takes (Sabril/Vigabatrin) he has to have an ERG every six months.  Our local children’s hospital does not have the capability to do this test so we drive 4 hours to the other side of the state to do it.  The ERG tests the nerves of Jackson’s eyes.  It entails putting him under anesthesia and is only about a 30 minute procedure.  The purpose is to test whether or not Jackson has any permanent peripheral vision loss due to the medication.

Sabril has been Jackson’s miracle drug.  Before we put him on the drug Kevin and I had to make the difficult decision between risking vision loss and taking a chance that this medication might stop the seizures that plagued our little one.  It was one of those tough decisions that parents should not have to make, but the kind that many parents of special needs kiddos have to make daily.  Jackson’s seizures stopped within 4 days of taking the medication.  After 1 year and 5 months of watching our son seize, he was finally free.  The elation I feel about this is not something I can write about.  While he has had maybe 4 seizures since being on this drug that is nothing compared to the 10-15 he was having daily.  Every day Jackson doesn’t have a seizure is a miracle day to me.  It gives him a better chance at learning and progressing and that isn’t something you can put a price on. 

Having said that, it was made quite clear to us by the doctor at Seattle Children’s Hospital that the seizure medication has done damage to Jackson’s peripheral vision.  While I knew this was the risk, I still felt like the doctor threw a baseball into my chest when he told us.  The damage isn’t catastrophic.  Jackson isn’t blind peripherally.  He has about 60% of what a normal person has.  Things are more difficult for him to see peripherally but his forward looking vision is still good.  The good news is that it won’t get any worse.  The bad news is that it won’t ever get better, the damage is done.  We took the risk and now Jackson will have to pay the price.  I feel extraordinarily guilty.  But I am also quite aware that the risk was worth it.  Being in this position as a parent is ridiculous, infuriating, heartbreaking, and makes me want to throw dishes at the wall while screaming curse words.  This is definitely not what I thought parenting would be for me.  But it is.  If I could call my Dad and ask for his advice I know exactly what he would say – “Well there isn’t anything you can do about it now Honey.  You just got to move on with your life.” So that is what I have to do.  Move on and celebrate every day that the seizures stay away, far away. 

Now on to my Seattle Children’s Hospital rant!  When I called to schedule this procedure I explained to the scheduler that Jackson has special needs, won’t be able to understand why he can’t eat (you can’t eat 12 hours prior to this procedure) and is absolutely obsessed with food.  Therefore, please schedule us as early as possible.  The time they scheduled us to arrive – 10:15 a.m.!  That is not as early as possible.  So we tried to sleep deprive Jackson the day and night before thinking he might sleep in long enough for us to just get up and go to the hospital.  When did Jackson wake up?  6:00 a.m.  Yup.  Shortly after waking up the crying/screaming/why aren’t you feeding me yells began.  So we quickly packed up and jumped into our car and drove around Seattle for a couple of hours trying to calm him down.  Driving around Seattle in rush hour is about as much fun as walking on glass in your bare feet.  We got to the hospital and checked in right at 10:15.  We waited maybe 10 minutes and they took us back to the pre-op area.  The nurse quickly saw us and got all the information she needed.  This whole time Jackson is screaming with little tears running out of his eyes.  I asked the nurse how much longer.  Her response – “The anesthesiologist will be in in about an hour.”  Say what?!  I actually kind of laughed because I thought she was kidding.  But she wasn’t.  She explained to us that Jackson’s procedure was scheduled for 11:30 a.m.  I was infuriated.  Jackson is screaming, and at this point it is just plain cruel because he has no idea what is going on and all he is thinking is “I am hungry, why aren’t Mama and Papa giving me any food.”  After making it clear to the nurse that we were VERY unhappy we took Jackson and started walking around the hospital for an hour.  We went back to the pre-op room just in time for the anesthesiologist and doctor to arrive.  We also let them know we weren’t happy.  Off Jackson went for his procedure and off Kevin and I went to eat.  We were also starving!  After meeting with the doctor for the results of the test they told us to wait in the waiting room and they would page us to come back and be with Jackson while he woke up from the anesthesia.  So we waited.  And waited.  And waited.  I finally had enough and told Kevin I was done waiting and that I was going to go get our boy.  The receptionist at the surgery desk didn’t seem too happy when I told her I was going to go back there and find my son.  She was like “you can’t go back there” and I was like “watch me”.  After a couple of calls and heavy sighs, like it was such an inconvenience, she said we could go back to the post op room.  As if I needed her permission.  We finally got our boy back and after letting him wake up for a while we were on the road home.  I couldn’t get out of that hospital fast enough. 

Hospital administrators who sit at their desks making up ridiculous procedures that benefit only the hospital should have to spend a day in that pre-op section and see what they are doing to the children they serve.  Jackson wasn’t the only one crying.  We weren’t the only annoyed and frazzled parents.  When it is a hospital specifically for children, their rights and needs should come first.  Our health care system is confined to rules, procedures and legalities.  Even the littlest patients are falling victim to this absurd system.  Next time we go to Seattle Children’s I am going to give them a sheet with MY rules for how my son will be treated and I will throw their rules in the garbage.  We will see how they like that.

They always say that times changes things, but you actually have to change them yourself." — Andy Warhol

Kid Update

It seems my posts lately have mostly been about me so it is about time I talked about my adorable, funny, goofy kid. 

Jackson’s big achievement this summer has been sitting up.  On March 13^th he sat up by himself for the first time.  He did it again a few times over the next few months.  But in the last month something has clicked with him and he is constantly sitting up by himself.  It’s a beautiful sight to see.  Not only is he able to sit up by himself but he is also rotating while sitting.  If he is facing away from something he wants to see he twists his torso, moves his legs and swivels around.  It is awesome!  It has given him some independence and confidence too.  His frequent sitting up has also increased his ability to sit for longer periods of time.  He used to only be able to sit up for a couple of minutes.  Now he is sitting up for as long as 15 minutes.  When Jackson starts to fall back or sideways he has learned to reach his arm out to stop himself.  All of these skills he has acquired over the last month or so have been a small miracle to me.  It has taken 4 years to see my son sit himself up, words can’t express the joy I feel when I watch him do it.  I just can’t get enough of it!

In May Jackson had a seizure.  Then in June he had another one.  Last weekend we were swimming in the lake when he had another seizure.  These new seizures are different from his old ones.  His body goes limp, he seems unreachable, he dry heaves, he has tiny little twitches, they last 5-10 minutes, he gets overheated and turns red, I can’t feel his heartbeat, and when they are done he is exhausted and falls right to sleep.  They scare the crap out of me.  The one last weekend prompted a call to the neurologist and an appointment with him this week.  His neurologist says they sound like Complex Partial Seizures.  The seizure medication he is on now also treats these types of seizures.  He is on a very low dose of the medication right now so we have room to increase his dosage, which is what the neurologist suggested.  Also, the last time we saw his neurologist was back in March.  Since then he has grown 4 inches and gained 6 pounds.  It seems he has gone through a big growth spurt.  Jackson will have an EEG at the end of this month to see what is going on in that cute head of his.  In the meantime I just hope the seizures stay away.  The last year has been a dream having those seizures gone.  I know that fighting seizures is something Jackson will do his whole life, but seeing who he is and the progress he makes when the seizures aren’t happening is wonderful and something I want to continue to see every day.  Fingers crossed!

Next week we head back to Seattle Children’s for another ERG (eye exam).  We have to do this every 6 months to test if there is any damage to his eyes from the seizure medication he is on.  Not looking forward to it as they have to put him under anesthesia to do the exam and I hate that.  But it has to be done and if this is the price to pay for his relative seizure free life then so be it. 

Communication with Jackson continues to be a battle.  He knows a little sign language – eat, more, please.  I am trying to teach him a new sign right now for “up”.  That way if he wants us to pick him up then he can sign it.  Signs are hard because he only really uses the right arm and hand.  The left arm still doesn’t work very well and the left hand is better but not real useable.  Trying to come up with one hand/arm signs is tricky.  He does have a couple of words he uses – Mama and Papa.  Papa is just coming around, meaning Jackson is just now starting to use it.  He has said it a handful of times as of now but I am hopeful that soon he will be saying Papa as much as Mama.  I just love hearing Mama come out of his mouth! 

Jackson continues to throw his fits, although I don’t think they are as numerous as before we went to Yellowstone on vacation.  I have been trying to keep him busy and on the go.  It is a lot of work!  The other day I saw a couple of friends post on Facebook about how sad they are that school is starting.  I thought to myself “I can’t wait for school to start!”  My kid needs out of the house and to be around other little kids.  And Mama needs a little down time from entertaining.  Bring on the school!  We have had a lot of fun though on our quest to keep busy.  Lots of trips to the lake and pools, Art on the Green, short and long road trips, walking trails, anything I can find that will make my kid happy. 

Lots of people have asked about Jackson and his puppy.  Jackson and Loki had love at first sight.  Then Jackson went through “I am sick of this puppy biting on my feet, hands and arms” phase.  While at the same time Loki went through “Oh I just love biting on Jackson’s tasty little feet, hands and arms” phase.  They didn’t mesh during this period.  Luckily Loki’s biting phase is coming to an end and the kid and dog are back to loving one another.  Jackson loves Loki’s kisses, he thinks they are hilarious.  He also loves pulling on Loki’s ears, tail and anything he can get a hold of as Loki walks by.  They are particularly cute when riding in the car together.  Loki lies across the backseat and has his head on Jackson’s lap while Jackson pats/pets Loki’s head as we drive around.  They are buddies.  The only downside is that Loki has grown, really grown, but is still under the assumption that he is a tiny little puppy.  He still tries to sit on Jackson’s lap and needless to say that is a recipe for disaster.  The best is when Jackson is rolling around and rolls onto his tummy.  Loki runs over and lies across his back, pinning Jackson down and squashing him.  Jackson yells in protest and Loki has this big grin on his face like “Oh my boy and I are having the best time.”  Loki never understands why I pull him off Jackson.  Jackson is forever grateful I did. 

That is where the kid is at.  Growing like a weed, sitting up on his own, hanging out with his puppy, and throwing fits until Mama finds something to entertain him.  Jackson can be exhausting but fun.  Sometimes I find it hard to find happiness in my life when I am so caught up in trying to make him happy.  I think I just need to remember that “Happiness is a place between too much and too little.” -Finnish proverb