Monday, February 14, 2011
I hate exercise--just ask my doctor. Since I was 16 years old, he's begged me to do any sort of cardio. I sit there on his paper liner and squint my eyes and jut my chin out in thoughtful, optimistic consternation as he bullet-points all the reasons why people would bother exercising and agreeably nod my head. And I still don't get it. Why run when you can walk? Why walk when you can drive? Am I right?
Usually I hate moving my body at all for mostly any reason, unless there's hooch involved in the before or after. And I'm not competitive--oh God no. But I started running last year. You could say I've channeled my inner Forrest Gump, maybe. But the best part is that I've found an amazing cause to run for--who could say no to respite, palliative, and end-of-life care for little kids and their families? London has it. Vancouver has it. How many cities in the US have this? Two. And one of those places is here in Phoenix. It's called the Ryan House, named after our personal friend Ryan. His family built this amazing facility in downtown Phoenix (adjacent to St. Joe's) from the ground up. Families of critically and terminally ill children from anywhere can come to Phoenix and reserve a stay and enjoy a well appointed room with world class medical and respite care for their child--for free.
If you've been blessed with such an extraordinary child, you know how time consuming and stressful it is to be at the beck and call of pulse oximeters, feeding pumps, body turning schedules, suctioning needs and more. If any of you families with medically fragile children visit Phoenix, you can contact the Ryan House in advance to take care of paperwork, and then enjoy your time here as a family, worry free. The nurses at Ryan House are the best of the best--and most of the doctors are the doctors we've chosen for our own kids, before the Ryan House existed. Everything about the Ryan House is world class, believe me--even the playground. What--you don't think a playground can be world class? Go visit. You'll see.
And this is why I am getting off my lazy, self-centered ass to run on 5 March 2011. That's right--I'm competing. I'm running a 5K to raise money for Ryan House so that more families can take advantage of this amazing home and amazing nursing staff. If you happen to be a runner, there's also a 10K and a half-marathon--it all takes place in Scottsdale in March 2011. If you're not a runner, then give me your money. I challenge anyone who reads this to donate $4 to my cause. Sure--$5 would be nice, but that somehow sounds like a lot more than $4. If the 64 subscribers to my blog each pledged $4, that would equal....like, a whole lot more money than this liberal arts graduate can count.
My family qualifies to stay at the Ryan House because two of my three children have a terminal disease. So, I run for my kids, too. I also run for myself, to prove that I can do something amazing. The last amazing thing I did was to mail merge 264 address labels on an Excel spreadsheet. Before that? Well, I went to Costco with three kids, by myself, on a Sunday--omg stop clapping, it's embarrassing. But to be honest, I haven't done anything else so amazing since carrying twin babies to 36 weeks gestation. After being on bedrest for 11 weeks. Uphill. In the snow. Both ways. (the clapping, though! knock it off!)
Runners--learn more and join Team Double Trouble on March 5.
Readers--send your $4 this way. And mention Team Double Trouble in the notes.
"Meh", you say. I hear you, I hear you. You need something compelling for your $4? I present this. But if you shed a single tear, you owe my team $25. (not that I could put a dollar amount on a baby's life. I just mean that certain stories compel people, and it's all for the Ryan House anyway.) This family--this mother--so encapsulates what it's like to lose a child--and a compassionate environment such as The Ryan House can be a key emotional component to coping with such a tragedy. Donate for her. Her. I've never met Faith. But I run for her. One day I hope to meet her. She's amazing.
And then go kiss your kids. Because nothing else matters. I don't care whether you throw your bills at me or not--just go kiss your kids. If you don't have kids, kiss your dog. And if you don't have kids or a dog, well, kiss a grapefruit (I don't know, what do you kiss in this situation? My grits? My ass?)
Friday, February 11, 2011
Do you know how to code an iPad app? Do you know someone who does? Do you network with people who might? I need your help. Spread the word.
The twins' Early Intervention therapists first tapped me last year to speak on their behalf to win a huge grant to supply their "workshop"--and by "workshop", I mean an until-now nonexistent place for occupational, speech, and physical therapists who serve developmentally disabled infants and children up to age three to adapt and store toys and devices for young children who are so developmentally behind that they cannot thrive without the special assistance that knowledgeable therapists can provide.
Other than my children, nobody is more important to me than the individuals who serve and support my children.
So last Fall, I drafted up index cards with my speaking points and ironed my clothes and put on lipstick and went to a ballroom at the fanciest resort in town to speak on behalf of our therapists. I told those executives and community leaders what these therapists do for my family--adapt our high chairs to improve their spinal posture, use common office supplies to separate the pages of their books so that their weak hands can more easily turn pages, tip me off on the latest toys and educational software that might meet their needs, suggest innovative ways for the twins to operate their electric wheelchairs, etc. And our therapists could be even more helpful to the community if they had some space to store their supplies, company money to purchase the incidentals, tools to help them cut plastic and foam to form adaptive seating for so many young children, and tablet PC's to introduce their young clients to the limitless world of educational technology!
And then a month later I was invited to the awards dinner. I had nailed it--my presentation won the $100k grant for our therapists. I drank some free wine and ate a LOT of bacon wrapped scallops that night. I shook a lot of hands and I suspect caught a lot of germs. Eh, give and take.
So, my therapists now have a space for their workshop. Big, expensive tools are on order. Other supplies have been delivered--including iPads. They even got some iTunes gift cards, which has been nice, so that they can browse the App Store and determine what kind of apps are suitable for their young clients.
In general, iPad technology is amazing. It's even more amazing from the perspective of a parent of children who have limited use of their arms, hands, and fingers. And I know for a fact that Apple doesn't know how useful their technology is in the hands of the disabled community OR ELSE THEY WOULD OFFER DISCOUNTS OR INCENTIVES TO SCHOOLS AND CHARITABLE ORGANIZATIONS WHO WISH TO BUY THEIR PRODUCT.
I digress. Back to my point--our therapists now have iPads in hand. They've discovered some apps that will perfectly meet the needs of some of their young clients--but other clients, not so much. They wish to meet with someone who can write apps for them. These would be simple apps--imagine the finger dexterity of a patient with cerebral palsy, for example. I am talking about creating apps that are cause-effect heavy.
I don't know how complicated it is to write an iPad app, but if you know how to do it and are willing to donate your time, this company has a 501(c)3 tax ID, so I imagine you could even write off your resource hours. My therapists have specifics around what they're looking for in an app. Ping me so that I can put you in touch with them. And repost this to any online community that might be able to help us.
Tuesday, February 1, 2011
I have no doubt that a majority of three year olds can write her own name, but this particular three year old has certain fine motor skill deficiencies that prevent her from pushing some kinds of buttons, holding a telephone to her ear, or even grasping a pen (or so I thought). I wasn't sure if she'd ever be able to express her name unless it was by using a touch keyboard.
Pretty sure she's practicing for when she's elected President of the United States of America. Those folks have to sign mad numbers of autographs, yo.