Family pictures

What does family pictures have to do with my husband's disability: he is limited to motion and has a hard time getting around; a hour out on his feet can put him down for two days; and he can't sit in one place for very long either! Garry goes from laying, sitting, to standing, and cycling back through again. Sometimes, for about two hours he can go between sitting and standing, but that is on his good days.

Let me start with Today (Jan 31) I spent time running around helping others "buy" clothes for a picture setting. Jessica insists on blue, black, white, and / or gray to be worn. Many do not have these colors. Chloe's clothes all have some type of pink in them (too much, even if they are tiny flowers I am told), William's clothes consist of blue, but has yellow (too bright), Sammy doesn't have a dress-like top, and Anna had nothing that wasn't patterned with bright colors; Derek doesn't have a proper dress-like shirt, and Ginny just couldn't wear her very formal skirt and top that would win her a job--all this for a family sitting that Garry can't go to.

I can't help think about what he misses by not experiencing the family outside of his little domain--he rarely comes out of the bedroom, except to exchange his water bottle with a fresh frozen one. His life, now, consist of television watching--programs and movies (bought and rentals).

He is seriously addicted to the television. The DVD recorder / player went out on Thursday and he nearly had withdrawal. It took him four hours to disconnect the burnt out DVD and install Ginet's (of which she hadn't been using). I can't image what he would have done if her DVD had been hooked up! He couldn't wait for one day for me to get a new player, and he couldn't wait until one of our children were home to help him. I kept him at bay during the day before classes, but after I left, well . . . you get the picture. That is the most movement I've seen him do for awhile--but he paid for it! He was down a half day on Friday.

I know he NEEDS activity because in the long run it would help his muscles. If he could do everything at little tidbits until his body started "taking" to it. I have spoken to different people that have similar problems to Garry, and they all said that he needs "tiny" exercises and some "massage" therapy. He won't do it. While neither of them will cure him, it would help his mobility and keep him from being so sore and worn later when he has to "get out."

I'm wondering how I can get him more involved with family functions that happen in the house as well. He'll hide out during those times as well. He keeps saying he needs new clothes, but I can't buy them for him because his waist line has grown. He was just complaining about needing a new suit "encase" he does have to go out. I doubt he would even go to a sibling's death--he barely went to his nieces wedding two years ago. His mother may get him out of the house, but at this rate, I doubt it. I'm already telling my last daughter that he may be pushed down the isle in a wheelchair. She isn't happy about it; Garry makes jokes; I want him to walk.

Today has turned into tomorrow (Feb 01). The wind is blowing just enough to create a small roar through Garry's window fan. One of the side effects of the medication he takes is weight gain and being hot all the time. He was always on the little warm side before the disability, before the meds; now it cost me in having a bedroom that never gets warm, and a heating / cooling bill. A cool shower makes him sweat. Any movement, such as him getting the DVD hooked up, causes him to sweat. He is on blood pressure medicine. An active man severely slowed, and just over 50. How well will he move by the time he is 55? With research, we've been told, on stem-cell, scientist may find an answer to all of his multiple problems.

Controversy for me. There are different ways to receive stem-cells. One of those ways is not an option for us: abortion. Unborn babies murdered for the advancement of health? What could these babies give us in years to come? A cure for the common cold? Still, the other stem-cells that are used can only take scientist so far. There is also another issue with fetus stem-cell, something that deals with reliability in its use. I don't remember exactly. What you can get from one doesn't mean you can get it from the others. Anyhow, Garry, nor I, am willing to kill to help him "get better." It has no logic.

The doctor offered to raise his dosage on vicadon. Garry refused because he doesn't want to become seriously addicted. I don't think he has a choice. Pain management is all that is left to him. It has been a week since he saw the doctor, now he is wondering if he should have said yes.

Thinking even deeper into all of this: what will happen when his exterior body stops functioning? Can these multiple problems effect his organs? Will I be able to care for him when the time comes? Baby poop and pee is one thing: adult feces is another.

Oh hell! What will I do when he can't even hug me? I'm a person that has to have the physical contact. I'm already feeling neglected; I know he can't help it. I sometimes wonder if I'll have the strength . . . to . . . get through the long dry spell that will come. And then, I wonder, what if I die first? Who will care for him?

Keeping myself overly busy isn't going to keep my mind from all these "ifs," and definitely won't keep me at bay for affection.

Ah; BAY--I thought of a werewolf who cannot help itself, cannot control the urge. There are those days I can no longer keep from clinging to him. I can only shake my head as I think this and as I write this. What am I going to do?