Wednesday, February 13, 2008

The Passing & Hurry Blog

It is exhausting dealing with death. It is exhausting dealing with disabilities. Being a mother is too much sometimes. Being a wife, a teacher, a sister and a friend requires giving when there is nothing to give. Of course, there is an upside…or rather lots of them:

- Celebrating and remembering a single person’s amazing life.
- Small, tiny, little itty bitty, accomplishments…like saying “TH” at age three…
- Dates-when you only get three a year with the person who still makes butterflies in your stomach.
- Students who e-mail you five years later.
- Siblings who save your life.
- And lots and lots of friends and co-workers and neighbors and complete strangers who make your life complete and full, and define who you are and what you do in beautiful ways.

As the purpose of this blog is to discuss issues related to dealing with life and children with disabilities. I’ll do that. First and foremost, I’ll say that it is so easy to get lost in the rush of things and I think that is our biggest mistake. The one we’ll regret the most when we look back at this time in our lives.

After 36 years, only three of them spent living w/ACWD I keep thinking I am normal. If you’ve read this blog, you know I routinely go through the realization that LIFE is different with a child with disabilities…I tried to get a dog…didn’t work. Selling the house took 14 months…I’ve lost more friends than I’ve kept…My husband loves me still only because we were meant to be (circumstances have no effect on this kind of love…lucky, lucky beloved me), all holidays pretty much suck…So here is my big life/death realization…STOP RUSHING!

My father died on Thursday February 3, 2008. Since that day, I have heard that phrase at least 25 times. Brother, sisters, in-laws and even strangers keep saying to me, “sit down,” “relax,” “take it easy and just grieve.” Let’s see…I have also been called Mary Poppins, OCD, and totally frigging hyperactive.

All I can think is that my husband took off the day to be with my kids, so I can help out. There is no time for me to help at my leisure. I actually can’t just relax and grieve and think to myself I’ll be there when they need me. My life simply does not work that way. I actually need to schedule according to my life when I can “be there” for people and that just sucks. I probably am a spaz, but it gets stuff done, Here and now I will formally accept the titles of Pollyanna, Mary Poppins and I will revel in their blessings.

My Irish Wake will be perfect, the bagpipers will rock, the eulogies will be verbose, yet pithy. So, my Father died on Thursday. On Saturday we had an appointment with a major news station to discussion tax scholarships for children with disabilities. We wove the interview into our lives hoping that we could some sort of difference. Our feeling is that we have a duty to make a difference. Thee was lots of cleaning and lots of research. I know for sure I looked like shit on the camera. On Sunday I taught my Mom how to pay all her bills on-line. That required lots and lots of beer…

Oh, yeah, and the Super Bowl party we were supposed to host for my Dad. Right now at 9:50 I’m writing this and have no idea who won or lost, but think about how much my dad wanted New England to win since he’s from there. And I still have no idea how I am going to conduct the funeral because, as ALWAYS, I have no one to watch or care for my sign language speaking baby…

Sunday evening I realized that on Wednesday, the day after the funeral, we have an appointment at Children Mercy Hospital’s Disability Clinic to diagnose Miles. Three years we’ve been waiting for a diagnosis and this appointment has been on the calendar for 7 months. I haven’t filled out all the paper work and I have not finished the program for the funeral. I have to meet with a caterer, a bagpiper, a choir director, a cremator, a priest. I have make 150 color copies of an obituary, I have to set up “final salutes” with the US Navy and the Knights of Columbus. I have to send a mass e-mail to my students convincing them that they should keep doing the work assigned in the syllabus even though I am not holding class.

There are so many small things I haven’t even touched on here. Such as Valentine’s Day, my sister’s birthday, finding a new speech therapist for Miles, Baseball or soccer for Zen? And really all I can think of is life…death…What do I want my last thoughts to be…Yes….yes…I was okay…I loved well…because of that I was loved…I loved and was loved….

So, yes…I’ll let it all go for a bit. Someone else can make sure everything gets done, every step is researched, and planned…all the obligations are kept…Sign language is practiced, lunches, reference letters written, friends know I love them, husband gets a tech thing for V-Day. All of it floating up into the sky in a big hot air balloon of responsibilities.

I’m just going to live for a few minutes and see what it feels like. I’d be willing to bet it feels real, real good to just feel and watch all that love out there…

Miles and the Donkey Whisperer

Those of you who have the privilege of knowing our little Miles realize how utterly obsessed he can get with certain things. He can stand at the sink for hours and dump water from on cup to another. As long as he is plied with ice to make it more fun. He opens his mouth like a baby bird for bits of food not able to avert his eyes from the stream of water or put his cup down long enough to pop a goldfish in his mouth.

Right before Christmas, he became obsessed with horses and dinosaurs. This obsession is a long time in coming as he visits Ebenezer the donkey on Saturdays and feeds him carrots.

He has been having a horrid time going to sleep lately and we decided we’d surf through and find some horse videos. He could watch a few and it might calm him down. We found some great horse video with actual cool music and he loved it. He’d bangs his poor head trying to make the “horse” sign and we’d watch the videos and he’d actually go to sleep! Accidentally, in a horrible series of youtube searches, I found a donkey video that I thought he might like. He immediately started making the sound for donkey. This can’t be described in language. This video is of a donkey braying loudly at a man that is filming him with a hearty laugh. The donkey’s name is Honkey.

Every time Honkey comes onto the screen, Miles excitedly waves ‘hello’ to Honkey and talks to Honkey in his donkey voice. He won’t watch horse videos any more. Long gone are the cool videos made by teenage girls extolling the virtues of horse jumping and pop music. We now have to watch Honkey between 15 or 20 times a day.

It still makes me laugh every time and I love that he can ask for something instead of only signing.

Click here to watch the video: