Updates Good and Not-So-Good

Good evening!

One thing a special needs caregiver, or any caregiver knows is that some bitter can always accompany the sweet.  For me getting great news on one hand means I look behind me to see if the other hand is coming to smack me in the head.  Some might consider that paranoid but I've got plenty of scars to remind me that it's just a reality.

I received an amazing update about Tyler this weekend.  His house staff is more pleased with each passing week with his progress.  Specifically, he had an appointment this week to get a test which required blood draw.  At home that meant he would have to be put under so nobody would get hurt.  There was no way I would try having it done with him awake.  Part of that, I admit, was my growing inability to see him being held down to do a test.  In 23 years I held him down "for his own good" more times than I cared to count.  Every time we would compete the test I felt like I had done him wrong somehow.  I knew the test had to be done but all he knew was someone was inflicting pain and I was participating in it.  I couldn't make that distinction anymore and emotionally I couldn't be part of hurting him ever again.  But the test went better than expected this time.  Yes, he had a few security guards help hold him still, but the test got done and he had very little anger about it.

Tyler also visited the dentist this week.  The staffers said he was really cooperative and allowed them to get X-rays and do a full cleaning.  His dental health is quite good!

Right after this wonderful update Tyler began to have some of his usual belly bloat symptoms.  Every 3 to 4 months he experiences gas buildup that causes him to get bloated and not want to eat until it can pass through.  We have never known why this happens, and all treatments thus far seem ineffective.  At last check he is getting a bit better again so hopefully he is on the mend.  His physician is wanting him to take gas reducing medication to see if that helps.

I look at all of this as part of a long learning curve.  The positive news is awesome and I am thankful for it.  But even the not-so-good things are serving a purpose.  Tyler is learning to allow his staffers to care for him through the bad days too.  And the staffers are learning how to be there for him when he needs their help.  Everything, good and bad, is a building block for his future.

As a caregiver we need to try and create a building block from every positive and negative experience.  Negative experiences are opportunities to improve the overall condition of things.  Don't allow frustration or hopelessness to blind you to the lessons you could learn.  Keep your eyes and ears open and evaluate what the experience means.

Be well and God Bless.  Tom