Thursday, April 19, 2018

New Glasses, new braces and a rant

Lillian recently got new glasses.  They are so cute and this time she was being very difficult about picking any out and then we tried this one pair and she said yes and never waivered.  Little brother also got glasses, so that makes all children in this family plus Mom with glasses.

  Near the end of March we had to get back to the orthopedic brace guy and get into new braces because she's had SOOOO much growth she had outgrown the old ones.  Woohoo!!  We graduated her to ankle height braces and we've, of course, had some foot breakdown and had to make adjustments, but I think we are good for now.

We no longer have respite care in the house, so Lillian is back to going on my grocery day.  Today, as I pulled into Walmart, I saw there was handicap parking on the side of the building and I pulled in to park. I then looked up to see that Walmart had moved all their smoking benches and cigarette towers right in front of all the handicap parking spaces.  There was a lady sitting there smoking and I restarted my car and drove around until one opened up in front.  Seriously???  Did it not occur to even one of the managers of the store that not ALL handicap people are limited to physical disabilities???  In case you are new here, Lillian has chronic lung disease, asthma, COPD and ciliary dyskinesia.  (CD means when stuff gets down in her lungs,  she is unable to remove it.) .  I go in and talk to a manager who basically tells me that it's permanent so people can smoke out of the wind.  She then told me store management is who made the decision.  I ask to speak to them.  After waiting for at least ten minutes for someone to respond, a very young man approaches and I start talking to him about it.  He tells me he will bring it up in the next meeting and nothing is permanent.  He also said he was new there so he didn't know how long it had been that way.  I told him I live here and I shop here and it is fairly recent.

The same thing happened when I was leaving the hospital with her, THE HOSPITAL, that has signs posted EVERYWHERE that there is NO SMOKING ON THE PREMISES.  There were two women sitting on the bench right beside the main doors smoking.  When I asked the staff to enforce the policy, she said "well I can talk to them but it probably won't help" then I had to insist that she ask the hospital security to ask them to move.


I already stress about taking her out in public because of germs, let alone having to walk through a smoke cloud to get into the store.

Just another day in the life of warring for my daughter.  Life can be hard enough...rant over.

On a lighter note, we took Lillian to church on Easter Sunday and there is really no place for her as far as sunday school or children's church, but she sat really well through the service.  Our pastor was trying to shrug out of his suit coat and it looked a little like it was stuck, but it really wasn't, but she giggled loud enough for him to hear and he teased her a little, but all day she kept just laughing and laughing, retelling us how "joh tu e ja"  translated Johnnie stuck in his jacket.  It was so funny and she must have told me alone the story four times.