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……..
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