Sometimes Life Isn't Fair...

Sometimes life isn’t fair.  In fact, sometimes it just sucks.  Some days, you just want someone to fix all the hard things in your life at that very moment.  But…. Life is what it is, right?  We all know those hard things are there to help us learn and grow.  But, sometimes that truth doesn’t make the process any easier.

Yesterday, I went to see a new Ph.D. who I’d hoped would help us get to the bottom of some reoccurring “Jackson” behaviors.  We’ve done behavior therapy before.  It wasn’t a cure all by any means.  Things with J are okay and he is doing great.  But… they could be better.  He has this underlying current of tension that could erupt at any moment.  It makes for a stressful home life.  (Funny thing – he is quite the angel at school and church.)

I kind of knew going into this appointment how it was going to turn out.  Ryan and I were both leery.  Not that we're pessimistic people, but just the reality of our situation is that chromosome duplications can’t be removed.  Plus, after being at this for 12.5 years, is there any new information that is going to change our world? 

As I suspected, all of the top doc’s strategies were things we’ve already tried - nothing new there.   He gave us strategies to help with the moods and the screaming - strategies that we’re already using.  Yes, there are things we can tweak.  Yes, there are things we could do better.  No one is perfect.  So, we’re going to try this again and hope we can stay focused to help Jackson break some of these bad habits.

The challenging part is to know when to apply which strategy and keeping your cool in the midst of chronic behavior.  With Jacks, you never quite know which mood you’re going to get.  All of a sudden you’ll be at DEFCON 10.  He could be a ray of sunshine, or he could come unglued at the littlest thing.  A lot of his behaviors occur without provocation.  So… you know…. You just need to be ready.  Fun, right? 

After I left the doctor’s office, I wasn’t hopeful.  In fact, I was anything but.  I knew we could try the tweaked techniques, but I kind of knew in my heart the frustrations we deal with on a daily basis are not going away.  The flat mood, the irritation with others, being easily frustrated, not flexible, etc. are always going to be there on some level and that makes me sad.  Like, really sad.

And, if I’m being honest, it also makes me sad the family has to navigate such a toxic and fragile environment.  At some point or another, I’ve had heart to hearts with every family member and they've all expressed the same frustration and grief.  Luckily we all struggle at different times and so we can be a support to one another in this marathon.   And, we can be a support to Jackson.  We know this isn’t fun for him either.  We all know this isn’t a sprint.

On the bright side, the appointment made me affirmed in my parenting.  When a doctor says you need to do this, this, and this, and you already are doing that, it makes you feel like you have a good grasp of the situation.  Again, we’re not perfect, but we’re not floundering either.  So… that’s a positive.

But then again, there is the sadness; sadness this won’t ever change, sadness the other kids have grief over the brother they thought they would have, did have at one point in their life (in their mind), and sadness that every outing and interaction takes this child’s reactions into account.  We all have to be very flexible.  The rest of the family is at times, help hostage to his needs.  Sometimes it is hard to have joy in this kind of service.

I realize that must sound really, really awful.  Just trying to keep things real.  And, I probably didn’t word that the right way.  I think the challenge and the frustrating aspect to these behavior spikes is that you never know when they are going to hit.  You think you have your bases covered and that you’ve adapted to account for his needs, and then a bomb will go off. 

Take San Diego for instance.  We were having a perfectly nice walk along the beach and boardwalk as a family.  Jackson said something in appropriate and we corrected him.  Instead of stopping, his tendency is to repeat and repeat.  This was an important dialogue and we couldn’t let him continue.  It needed to be addressed.  The situation turned out to be very frustrating for the entire family and quite the scene.  Every time these situations happen, whether at home or in the community, it breaks our hearts a little.   There is a level of grief that resurfaces when you lose perspective and frustration takes over. 

 

Yesterday’s appointment was a bit of an eye opener and another stage in my grief.  I thought, “This is it.  It probably isn’t going to get a lot better.”  In the big picture, it doesn’t matter.  I get that and I hold on to my hope of eternal truths tightly.  But, if you can’t find the joy, sometimes it is hard to enjoy the freaking journey.  You want your family to enjoy each other, not tolerate each other.  You want them to have good memories of home, not of anger and fighting.  You also want your son to have joy.  You want him to enjoy his life and be engaged. 

It makes me sad to see him frustrated, bored, scared, tired, angry, friendless, and so much more.  A lot of times, I realize I’m trying to push my hopes on to him.  I admit it is hard for me to decipher when to push him and when to let him be.  But, I’m the mom.  It’s my job to help him reach goals and be as successful and as independent as possible.  Although, when I see him struggle and I know he is unhappy, I know he feels the grief too.

Just so you know we aren’t Debbie Downers around here.  We do have lots of good moments and days with joy.  The more the family can regulate their reactions, the fewer the outbursts.  This morning, as I was helping Jackson get ready for school, I could tell he was ON ONE.  This could have easily been a knock out, drag out, morning.  But… I was focused and ready for him.  Within a minute, I had him turned around and we were on to the next thing.  We sat down and did his piano practice (crap, Circ… I’m turning into that mom J), we got his teeth brushed (I help him because he doesn’t have the dexterity to brush adequately – raging gingivitis last year), hair done, and math program done, etc.  We made it.  Maybe just the act of going to the Ph.D. will be the answer.  Maybe it is just like reporting your weight when you are trying to lose.  Maybe the accountability will be the key.  We’ll see.  I can’t think about it too much or I get overwhelmed at the amount of mental energy each day requires.

 

Because of the hope I have and the gospel principles I know to be true, I’m able to wrap my head around what we’re dealing with daily.  We’ve made it this far.  There has been so much progress over the last 12 years!  I know we’ll make it.  I just hope everyone makes it in one piece and with some good memories and life lessons. 

 

Everyone has something in their life that is a MAJOR challenge!!!  If you think they don’t, you just don’t know them that well.  Or, maybe they are unlucky and their Goliath is waiting in the wings.  In fact, a few days ago, I was kind of bummed about how things were going with Jacks.  I’ve always heard people say they wouldn’t ever want to switch challenges with another person.  So… I thought about that.  I started to think of people I knew who were going through tough challenges.  And you know what… they were right   I don’t want another person’s challenges.  They are too hard.  I think I’ll stick to the life lessons we’re learning, thank you very much. J

 

Some days, all you can do is breath in, breath out, and think to yourself, “You can do this!  You and Ryan can do hard things.   Lex can do hard things.   Jackson can do hard things.  Collin can do hard things.  Isabella can do hard things.  Come what may and love it.  This will be fine.  It will all work out.” 

Deep Inhale……..