Tedious Details

I can only imagine how disappointing my blog must be for the few of you who read. I try to post about Avery regularly because I know this is where many people go to get an update, but beyond that, I'll admit: I'm a bore. If I really shared all the tedious details, you would either fall asleep from lack of attention or if you really tried to keep up, your head might spin.

With the risk of sounding redundant, if I could use one word to describe my life right now, it would be off-balance. I never feel quite right or complete. I'm pretty much always tired, and I never feel like I'm caught up on anything. When I get to go home for my quick over-nighters every so often, I am greeted by an empty, dusty house. In the beginning, my OCD tendencies forced me to dust and sweep each time I went home, and then I quickly learned that when I would return home a week or so later, it wouldn't look like I had done a thing, and I really didn't want to spend half of my limited time at my house cleaning it. Don't worry; I'm not a complete slob. I do clean my toilets every few visits, keep up with laundry, dishes, and make sure there's not clutter in the floors or anything. But, my house just feels un-lived in, and there are dust bunnies gathering around the legs of my couch on my hard wood floors that I absolutely force myself to ignore when I walk through the door. Each time I miss a few days with one of my kids, I feel so out of touch. Emerson is doing new things almost daily, and it's hard for me to keep up. Sometimes I worry that she doesn't know who exactly is her mommy, although she says "Mamamama" an awful lot! Bryson is doing well, but he has gotten so clingy that when Phillip or I are around, he doesn't let us out of his sight much. He has been sleeping with us since Avery has been here...bad habit, I know. But what can I say? His bed buddy was in the hospital and my bed buddy was staying with his, and we just needed each other's company. Now he says he isn't going to sleep in his bed until Avery comes home. Uh-oh. I'm a little worried!

We have slowly been evolving as a family living with a child with special needs. Our denial has finally faded, and we're trying to make sure Avery has access to as many resources as possible in his future. We have learned that the older he gets, the more difficult transportation, bathing, diapering, and just everyday care becomes. We've also learned there are some amazing programs out there for people like Avery, but unfortunately, getting connected with them isn't always easy. Something I did learn this week that was a bit disappointing was that while Avery qualifies medically for Social Security Disability, we don't qualify financially to draw. We were denied over a year ago, but it was confirmed recently in a meeting with the Financial Advocate here at CCHMC. Apparently, a married couple can not have more than $2000 in resources - that includes our equity in our home, Phillip's 2002 truck that is paid off, a small life insurance policy that Phillip's parents bought for him as a kid that we continue to pay on, and our modest savings account. Despite our current shrinking income, I was told by that we would be better off if we rented a house, had two cars with payments on them, and spent our savings. Clearly, the system is flawed. I feel like we are being penalized for working so hard by buying, remodeling, and selling disgusting repossessed homes and trying to live within our means. But, we have been told that Avery might receive some help through the Montgomery County MRDD to be placed on a Medicaid Waiver so that he will qualify for secondary isurance regardless of our income. The downside is that there is a 1-2 year waiting list. Yikes!

Some other recent bad news is that my step-grandpa, Ralph, is probably going to be passing away soon. He has been a wonderful grandpa to me all of my life, and it is hard to see him drifting away. I went yesterday to Hospice to see him and say good-bye just in case I don't get to see him again. Again, I'm reminded how life is but a vapor, and I want my life to be lived in a way that I don't have regrets when it's my time to go!

Some good news is that I'm going to be gaining a step-mother-in-law (is that the proper title??). My father-in-law has been a very lonely man since Carolyn passed away a year and a half ago. He has met a lovely woman, Mary Isaacs, who has had a rough time too over the last couple of years, and I guess they fell for each other. Anyway, the date is set for July 14, and I hope they have many happy years together! I think having a wedding to look forward to may help him get through these difficult treatments he is taking right now for his cancer.

One thing about this whole process I have learned is that I really don't have many problems. Well, I do have a couple really big problems, but not nearly as many as I used to think. I hear people complain about their bad days, and I know I have been guilty of the same thing, but really, those bad days aren't so bad. They're just part of life. If money can fix it or buy it, it's not really a problem. If a little effort or hard work can accomplish it, it's not such a big deal. Sometimes I long for the days when I thought everyday inconveniences -- fussy kids, messy houses, heavy traffic, unpaid bills, two-faced people, etc. -- were problems worth losing sleep over. Oh, how life has a way of changing one's perspective!

You know what actually sounds good to me right now? Grocery shopping. Actually buying more groceries than a loaf of bread, gallon of milk, and formula for Em. Cooking. No, I'm not a great cook, but I enjoy preparing and eating meals at home, and I miss that. Sitting on my deck and enjoying these warm evenings. Working in my yard. Taking the kids to the park. See, I told you this would be boring!! But the ordinary things that I see so many people post about and hear so many talk about doing and take for granted are the things I miss so badly!