Still Struggling

As noted in a previous post, Tyler is currently struggling with his ability to control his behaviors.  We hate it for him, and we hate it for everyone else that is trying to help him.  It's a helpless feeling knowing something is wrong with your child, and not being able to make things better.  Its worse yet when the people trained to evaluate and calibrate his medications appear to be sleeping at the wheel, or worrying about bureaucratic details more than serving him as they should be.  I'm sure every special needs parent has had those moments where they want to grab someone by the collar (I'm being kind) and shake them while screaming "I don't give a damn about anything else other than making my child better!"

The girls and I decided to spend some time with him after church yesterday.  We had him and his caregiver meet us at the park, and we picked up subs along the way.  His mood in church seemed pretty good, although he seemed tired and nodded off during the service. The park was busy but we found a nice shaded table to sit and eat.  It was beautiful out with ample sun and a breeze to keep everything nice and cool.  We were all talking about how he was doing when I suddenly got a hard kick to the leg.  It startled me more than anything. Its highly unusual that he ever strike me, and this was completely out of left field.  We went from calm to red alert in a second.  My reaction was to get him right up and start taking a walk....he always loved to walk.

At this point I found myself falling into every old habit I ever had.  I watched every movement he made looking for a physical sign that would tell me what is wrong.  He wasn't cocking his head back so there is no danger of his shunt malfunctioning.  He isn't pushing his belly either.  But his balance is extremely off.  I also became concerned at how quickly he tired, as he always outpaced me with no problem.  I decided it was best if we shortened the walk and allowed him to head back home.  But not before one quick selfie...

I find myself in a familiar mixture of worry, sadness, and frustration now.  Its amazing how quickly I can be taken back to those emotions.  We all made so much progress over the last 2 years, and now it feels like its all gone.  It will probably sound juvenile to say this, but it just isn't fair.  Tyler has had more than his share of difficulties in this world and he deserves to be content and at peace with his surroundings.  Something which seems so little to ask shouldn't be so hard to maintain. It feels like all 4 of us deserve to someday have that peace of mind that continues to merely come in temporary periods.  

I know I have to dig in and fight for him.  I need to make some calls to his doctors and start pitching fits until something is done with his medications to help him get through this.  It just feels like today I'm trying to run with feet of clay.  I want to be angry so that it motivates me, but I feel more sullen and defeated.  

Tyler needs me.  Tyler needs those around him to rise up when he cannot.  There has to be actions made on his behalf and I swore to him as his Dad and his Guardian that I would always be the last line of defense for him...a line that would never break.  

Its time to pick up the shovel and start digging.