Easier Said Than Done

Here we are into August of our "Finding A New Normal" year with Jordan. We're still looking. With her first birthday on 30 December 2006, and the start of 2007 just 2 days later, our plan was to take charge of our lives and get on with living each day to it's fullest while incorporating Jordan into our family instead of making her the center of our lives.

Easier said than done. And after Thursday afternoon I realized just how far away from that goal we still are. Our attitudes are right, but our bodies & minds just can't seem to catch up. No matter how hard we try to make our lives "normal" -- the fact remains that we are stretched to our limits with seizures, medicines, doctor appointments, therapies, medical equipment, and of course, fighting with the insurance company for things she needs. Can we do it? Barely. Can we do any more? No way. We've hit our limit.

We are very fortunate that Devon has a good job and good insurance to go with it. But, in an unfortunate way, that puts us out of reach for the next level of assistance that we really need. He makes too much money for us to qualify for any federal or state assistance, but not enough to hire our own nurses to take care of her. I'm very disappointed in the state of Washington, which normally has a good reputation as a caring & liberal state. All the programs that Jordan qualifies for medically are closed & have been replaced with waiting lists. For one program we are #11,300 on the waiting list. That means 11,299 people have to pass away for her to get any help (what we really need is some nursing care -- day & night -- and a secondary insurance would certainly help with her ~$1000 of out-of-pocket medical expenses each month).

For the past month I have spent about 20 hours a week, or more, on the phone with federal & state programs, and tens of advocacy groups, all of whom told us we have no hope of getting any help. I am even conversing with the personal assistant of our state representative, who is calling people on my behalf (including the director of Medicaid eligibility for the state), but we're still spinning wheels.

One person in Tennessee with a special needs child suggested I contact Hospice. For children with chronic, serious health problems they have a special palliative care program, and right now, I'll take anything I can get. But let me tell you, spending 3.5 hours in a meeting with a hospice social worker, a hospice pediatric nurse, and Jordan's pediatrician (who offered her afternoon off for the meeting) was definitely a low point in my life. I guess from now on I'll be able to get through other crappy days by reminding myself that "at least I'm not signing up my own daughter for hospice today." I wondered in the car on the way home how the body can produce so many tears -- there's a never-ending supply when you need them. I also went to bed at 5:00pm to rest my aching head, and didn't get up until Jordan's seizure festival started around 02:00am, and have been going ever since. So even though it seems like I should have gotten some extra rest last night, I'm still pooped.

One of the most irritating things about our hospice meeting was having Jordan's pediatrician, who we really respect, appreciate, and admire, tell us that we have to get on with life and not to spend all of our time focusing on Jordan. Believe me -- we want nothing more. But you try to "get on with life" & do the things you like or need to do with severe sleep deprivation & extensive medical care for one child. Just tell me how to do it, and I will! "So what if she has a seizure while you're hiking" she declared. I had to remind her to think back to when her own kids were young: Remember how hard it is to wrangle a 2-year-old into a car seat? Now, imagine wrestling a 27-pound, seizing, tube-fed, noodle into a carseat, then out, into a 6 clasp wheel chair, and cleaning up the barf, which happens in half of all car rides. Then dragging the suction machine around so she can breath & not choke to death, just for a trip to the grocery store. Now imagine packing up all of her medicines & food, the feeding pump, and the suction machine, and heading out to the woods for a hike or camping. Who has the energy when a weekend gets here? I can barely take the two girls to the park at the same time (which brings up the whole separate issue of Avery & dealing with her needs. . . but that's a different post).

I guess it's a good thing we're not lazy people, but it's definitely easier to plan to be "normal" than to actually do it!