Mystery Lane

Mystery Lane

Thursday, February 23, 2012

Riding A Horse

Yesterday Jackson started riding horses (there is a short video of it below this post).  We had been on the waiting list for hippotherapy for a few months so to finally get a slot was super exciting!  A lot of people have asked me what Jackson could gain from this, other than having fun of course.  I’m no expert on this type of therapy but I do know that horses make similar walking movements to what we humans do.  Being on the horse will hopefully “train” Jackson’s brain that the movement he is feeling is the movement he needs to make.  It will also build up his core strength and balance.  Jackson has an incredibly strong core (you should feel his belly muscles!) but his balance is still undeveloped.  Learning how to use that strength to balance and build up the muscles needed for balance will give Jackson a better chance of walking.  Also riding horses provide a ton of sensory input, which Jackson craves.  All in all it will teach Jackson a lot of skills he needs.
Jackson’s hippotherapy sessions will be 30 minutes long.  Yesterday he lasted maybe 15-20 minutes.  He started off very well, sitting up straight and really enjoying the riding.  But he slowly started deteriorating.  He would lay back on the horse or lean forward to lie on the horse.  You could tell it was hard for him to sit up for that long period of time.  Also, he had his legs spread pretty far sitting on the horse, a position he is rarely in.  He actually did better than I anticipated and it was so fun to watch him riding.  We will go back next week and see if he can hang in there a little longer.  I am sure it will take a while to build up his tolerance for a whole half hour session. 
Adding this therapy to our schedule made us have to rearrange some other therapies.  Jackson now has a very full schedule of therapies.  Every week day afternoon is now filled with a therapy of some sort.  The kid has a busier schedule than some business executives!  I always envisioned that someday I would be a soccer mom.  Running around town from practice and games, spending most of the day in the car.  Instead I am a therapy mom, running from school to therapy, spending most of the day in the car.  Not exactly how I imagined my life, but after seeing Jackson on Chester the horse yesterday, I couldn’t be prouder to be a therapy mom. 

Friday, February 17, 2012


Well it seems I’ve gone from one end of the spectrum to the other.  Lately, I’ve just been happy.  I’m apparently the definition of am emotional rollercoaster this month.  The source of my new found happiness is my beautiful boy.
It seems to me that Jackson is making some noticeable progress.  The kid is just different lately.  One area he is progressing is in his standing.  The Guild School loaned us a stander while we wait for our insurance company to decide whether or not they will buy one for us.  It’s Molina so I’m not holding my breath.  Every night after dinner I have been putting Jackson in the stander.  When we first started he lasted maybe a ½ hour.  This past weekend he was in it over an hour one night and never once fussed.  His legs are getting stronger and he is standing for longer.  Yeah! 
Balance is something we are working on in occupational therapy along with giving Jackson the vestibular movement he craves.  Movement is what we are working on in physical therapy.  Jackson’s PT has him standing independently so that he can start to make the connection that he has a body separate from others and that he can move on his own.  When he is standing on his own the PT puts toys in front of him that are just a little bit out of reach.  This forces Jackson to move forward to reach them which will teach him that he is capable of making forward movements.  The PT is also tying Jackson’s feet to his and walking with him.  For some reason, all of these things are working with Jackson right now.  He is making connections and it’s so amazing to see.
To top it off, I got news last week that a riding slot finally opened up for Jackson at a local therapeutic horseback riding organization.  Next week Jackson will start riding horses!  Hippotherapy, as it is known, is very good for building balance skills and walking skills.  I don’t think I’ve ever been so excited about a therapy for Jackson.
One unhappy bit of news has entered my life.  Our little foster daughter Vivionna will be leaving us March 1st.  Despite the fact that in the last couple of weeks she has been a “terrible two” (oh my lord!), I am going to miss her very much.  I’ve learned a lot from her about being a parent and especially about being a foster parent.  One disheartening thing I’ve learned is that our foster care system is severely broken.  The priority is not to do what is best for a child, but to do what looks best on paper and that which allows those who are making ridiculous/uneducated decisions to look good.  We still plan to be foster parents in the future, after a short break to focus on Jackson.  From now on though, I will enter into it cautiously.  I hope Vivionna will be a resilient child and rise above, only time will tell.
For now “…the true secret of happiness lies in the taking a genuine interest in all the details of daily life…” (William Morris).

Thursday, February 9, 2012


When I was in the third grade I came home from school one day and my mom and sister were leaving.  My mom patted me on the head and said “Tell your Dad we left him.”  For the next five years it was just my Dad and I.  A single man raising his daughter in the 70’s was a pretty rare thing.  Then when I was in the 8th grade my Dad married Sandy.  And thus began four years of mini-wars with my “evil stepmother”.  I became pretty spoiled having my Dad all to myself for 5 years.  Sandy moving in on my territory did not make me happy.  Recently one of Sandy’s sisters said something to the effect that it was so wonderful that Sandy and I had always gotten along.  Sandy and I got a kick out of that and quickly let her know it wasn’t true!  I can write all this and laugh about it because Sandy and I are close now. 
About a year and a half before my Dad died Sandy started slurring her words.  One thing you should know about Sandy is that she is stubborn.  As my Dad would say “She is as stubborn as a mule”.  We tried to get her to go see a doctor about the slurring but she insisted she was fine.  Finally her siblings convinced her something was wrong.  She went and saw her doctor who couldn’t figure out why it was happening.  I thought she had had a stroke but tests showed she hadn’t.  Her slurring got worse and whatever was causing it went undiagnosed.  Then Dad died.  A couple of months later she got sick and the quest to figure out what was happening became more urgent.  She was having trouble with her hands and tripping a lot.  Finally one of her doctors decided to test her for ALS (aka Lou Gehrig’s disease).  As soon as I heard the letters “ALS” and Goggled it, I knew that was what Sandy had.  Sure enough 5 months after Dad died Sandy got the ALS diagnosis.  It’s been 16 months since her diagnosis and she is quickly declining. 
You may be asking yourself “What does this have to do with anything?”  I just spent 4 days in Denver with Sandy and it made me realize she is now a disabled person.  Just like Jackson.  A few years ago she was an active walker, community volunteer, sang in her church choir, played the piano, gardened, and loved talking.  Today, the Sandy I know is trapped in a body that is failing her, she can’t speak, and in her eyes I see a sadness, a longing to be her old self.  This disease is taking away a woman I’ve spent most of my life with.  It’s cruel, unforgiving, and heartbreaking.  The worst part is that it will define Sandy at the end of her life just like Jackson’s brain malformation defined him from his infancy.  Jackson teaches me lessons every day.  Now Sandy is teaching me some too.  The biggest, best and worst lesson is that no matter what you think your life is going to be like, at any given moment it can change, for better or worse, and you have absolutely no control over it.  Even when you are a control freak like me.  But most of all you should “Know the person, not the disability. In fact look past the disability and you will see a person - a person who has the same thoughts and feelings as anyone else.” (author unknown)  It is hard to look at Sandy and not just see the person she is now.  But when I look at her I remember all the good times we had, what a great cook she was, how she used to make me so mad, and how she gave a lonely little girl and her equally lonely Dad a family. 
This disease may kill Sandy, but it won’t kill my relationship with her.  I’m just going to keep adding the memories up until the very last second.  Disabled, different looking and different sounding aside, Sandy is still my mom and Jackson is still my son.  Beautiful people in different wrapping.  That’s all it is. 
To learn more about ALS go to: