Saturday, March 8, 2014


Change is constant. I am not really sure why LIFE doesn't mean the exact same thing as CHANGE. Living things are always changing. It's a fact. And while sometimes change is wonderful, many times, at least while in the process of change that we feel and live (as opposed to the molecular changes constantly occurring in our bodies that restore and renew most of us), change feels sort of icky, uncomfortable, or just plain discombobulating.

Those who help care for a special needs child or adult are extremely crucial to the success and mindset, growth and mental health of that individual......and yes, the parents, too.  When you have a great one, they are great.....beyond words. But when they leave your child or family, there is a huge void, lots of change, and sometimes huge stress.

Garrett has lost another caregiver. She came to us through an agency after three back-to-back girls in their early twenties who lived too far away to stay with us long and were still growing up. So we didn't expect those two girls to keep up the travel or the stability for long. Next, we were sent a lady just to meet and talk about Garrett. She was very kind but extremely obese and had a very significant limp. This would not be something I would even notice, but keep in mind that was almost two years ago, and Garrett was only six, wandered, ran off sometimes, and lives near irrigation canals but cannot swim. So we needed more of an olympic athlete as a caregiver at that time! The agency called the next day to tell us she didn't feel she could keep up with Garrett. No surprise. But then there was a miracle!!!

First, let me share with anyone who may not have dealt with caregivers/PCS/respite care/home care. NO ONE LASTS LONG.....well, almost. And then how do you define "long"? The revolving door of caregivers seems to cycle almost quarterly. Then you might get six months. That's cool! But then you can get one who has some stay about them, rarely.  The next lady who came into our home lasted a year and a half! THAT IS MAJOR-LONG! She came over one day with a supervisor and said after only a few minutes that she would love to work with Garrett and start as soon as possible. It is only fair I say that before this, we had a young lady who was in high school who was also a good friend and neighbor. She was with Garrett for many months, but when she moved away for college, that left a gaping hole! We loved our Shelby....and still do, of course! She still brings cookies to Garrett when she is home from college! Before that, Shelby's mom, Andrea, was an angel to fill the need until Shelby turned 18 and could do the job. WHAT BLESSINGS these two ladies still are in our lives! Back to the point. So this new caregiver was a hit right-off. She was a very mature adult that was a CNA, had worked in a psych ward, nursing home, and raised three boys. She was also a former gymnast, a history genius, an avid reader, extremely creative and loving, but just stern enough to get the job done. Garrett was her only client, and man did she do a great job with him! She didn't just "work with" him. Oh no! She INVESTED in his life, learning and future.

Last year, her health took some turns, but then things leveled-out. Then a few weeks ago, she called to tell me that there were new, life-long health issues that made it unsafe for her to work with Garrett any longer. Of course, I begged her to wait a while to make that final choice. Could she see what docs said at her next appointment? Could things change? Could medicine help? Nope. She had made up her mind, and based on the diagnosis, she was very brave and honorable to make the choice to stop working with Garrett. I sort-of knew this was likely soon deep in my brain, but I wasn't expecting it quite yet. I had seen the changes in her. But this was it. It was over. Eighteen months. Eighteen months of loving this lady like GOOD family.....the family you wished lived next door. Eighteen months of never worrying one second when she had him. Eighteen months of smiling as I left her with him, knowing he was happy, safe and LOVED! That night was a long night. As I put Garrett through the routine of the evening of appendicostomy flush, meds, more meds, and tube feeding, table food, and all, I kept seeing reminders of this angel of a lady. There was the lap quilt she made with a pirate theme on one side and flannel paw prints from when we got Sammy on the other, lovingly quilted in a wave pattern. There was the pink, plastic basket she lined with grocery bags and placed by his bed to teach him to take off his own diapers every morning....moving towards more independence. There was the sign she just gave us for our kitchen. It "describes us perfectly," she said. It was about family. When I made dinner for him, there were the Star Wars cups she bought for all the kiddos at his birthday last July. Then as I tucked him in, we got into a bed with this super-helpful method she taught us to use to cut down on bed changing drama that happens daily. There was the stack of books she last read with him, the stool by the toilet where she would sit and encourage Garrett to poop on the potty and work through the cramping as she lovingly rubbed his back and let him lean his head on her. There were snowflakes still on the windows from their annual "snowflake Christmas decorating." This had been year two of that. There was art on the fridge, a backpack neatly handing on the coat rack, his shoes by the door, counting to ten, deep breaths, and lots of positive language he uses that all happened because of her.

How do you tell Garrett she isn't coming back? She begged us not to tell him she made the choice to quit. She was so worried about how HE would take this. I told her we, of course, would do things together, and we did last weekend. But man, this has been harder than I thought. I told Garrett a little fib. I explained that it was expensive for her to keep driving so far to our house, and she had to take care of a man who lived closer than us. Partially true. She was so afraid that if I told Garrett the truth about her health, he would worry about her. She didn't want him to have any worries, she said, besides which Wii game to play and if it was PE or music day at his school. And of course she didn't want him to know that she "quit" on Garrett.

Oh dear, I am officially crying over this as I recount it all! At the time, I was in a bit of a scramble as I needed to fill the huge hole in his care plan, but now it is sinking in. The woman was an angel-nothing less.

But God always provides. Not sure when or who said it, but I love this:
When God closes one door, He always opens another. But it may be hell in the hallway.

So a couple weeks before his caregiver quit, his school nurse and dear friend of ours asked if we needed any hours worked. I hired her through Garrett's personal budget as well as the agency hours he has. She helped as the lady who quit was taking more and more time off. This seemed to bridge the gap, and since the two ladies had met and conversed several times, they communicated about scheduling and care and routine, and it was great!! But then the long-time lady quit, it was like a bomb was dropped on me! I was worried about not only how to fill this huge gap, but how to take good care of Garrett's emotions as he learned his lady who would "never leave you". Wouldn't you know that the very next day, I learned that one of the aides in Garrett's special needs class was looking to work some more hours besides just the school days. I talked to her, and wouldn't you know that she said YES!!!! That covered our gaps....I thought.

Yesterday, the newest lady came over for some training, and when we discussed scheduling, she said she didn't really want to work weekends. We will have to try to figure out something else, someone to take some weekend hours besides our high school aid who is usually busier this time of year because of her athletics.

Never a dull moment, and here we go with more CHA-CHA-CHANGE!!!!