Wednesday, September 14, 2011
The five iPads that started shipping out earlier in the week have started to arrive.
That's always nice to know. It's a good, warm feeling.
You need those, especially when you might be struggling. I know I have been of late, with Bennett. He's just not been himself lately. His behavior has been hard to understand. Some of his self-injurious stuff is back, stuff that we thought was gone. Not sure why.
A couple of weeks ago he had an emergency MRI, just to see if possibly his tumor was back, since there was odd swelling on the left side of his head. There was some thought that maybe that was the cause of the behavior changes and some of the learning regression he had been having.
As it turned out, the MRI was clean. Thank God, of course...and yet, you do pause as a parent and say 'OH...OK, so why, then?'
That is, unfortunately, a road that you walk when you are walking down the road of Multiple Disabilities, as many of our kids are. It's a winding road of unanswered questions or questions that might be answered with...more questions.
And it also can lead to making the receipt of something like an iPad a very different experience as well.
In Jaxson's case, every day is an adventure, a struggle, in all kinds of ways, and the iPad is something that you have to put into a certain perspective. I know that his Mom, Lacey, who writes Jaxson's Fight does. Her messages to me have always been very matter of fact, which is amazing to me in and of itself, as is her blog, considering the battles she, and her family, fight all the time.
In one of her notes, she summed it up better than I ever could.
'Sometimes its hard to concentrate on development with him, because we are just trying to keep him alive.'
If I have one regret in all of this...Mission, is that I do not get to actually deliver these devices in person, or meet these kids and these families in person. I think I could learn a lot about life, about people.
Certainly in Lacey's case, about perspective, humor, warmth and courage, all of which she has in great abundance. Because with a statement like the one I just gave you, and multiple hospital visits, you would think that there would be a bleakness about her. But no. She, very much like many others I have encountered in this journey, like the Strong family, are instead beacons of light where you might expect to be surrounded by darkness.
Because right AFTER that, Lacey wrote, 'But man his spirit is amazing, and he makes people cry when they meet him in person. Just ask Heather. :)' Which of course I did, and the stuff Heather told me about the little guy and his family were amazing.
On a side note, I should point out, and I checked first and got the OK, that this iPad was given courtesy of a single donor. Joyce, mother of the Sarah from My Name is Sarah, has an ongoing friendship with Lacey and donated the iPad to Jaxson specifically this time around.
Glad that the we were able to help facilitate the gift in some small way, and glad that Jaxson is finally home from this latest round in the hospital. That, of course, is the best gift of all.
On behalf of:
The Mission: iPossible! Group