Friday, September 28, 2007

Get it Down...31 for T21

Tricia at Unringing the Bell had a cool idea. Since October is Down Syndrome Awareness Month, and it's always more fun in the blogging world when bloggers actually blog, there's a bunch of us that are going to put up one post every day this month. So check out her blog and the list there of all that are participating if you want to join us or just get in some good reading.
Get It Down; 31 for 21

It won't all be Down syndrome stuff, but I'm going to try to use it to organize some of my stories and thoughts around the time that it all first came into my life.

Monday, September 24, 2007

Trying to make time

I haven't forgotten about this blog, but it's fallen to the side a little as I'm having trouble keeping up with much of anything lately. I have some major life decisions that must be dealt with, a house that's in desperate need of maintenance and cleaning, and plenty of other less daunting things, but I'm not accomplishing much toward any of those things... but hopefully soon. A plan is in place for a few changes, so we'll see how that goes over the next couple weeks.

In the meantime, I'm spending my days trying to get enough fluids in Braska to keep her hydrated without overfilling her belly. (FYI...in case you don't follow her blog, we did go through with the G-tube procedure two weeks ago today.) It's hard to know how much she needs since she gives no cues, just sits there and talks while we put the milk right into the stomach. She's still sleeping well, which is a blessing, so that's good. In between milk feedings, I work with her on oral feedings, and that's a long process. So really, the whole day is all about feeding her, or cleaning up from feeding, or prepping for the next feeding...and a few diaper changes in there too. Add in therapy three times a week, weight checks once a week, and still trying to find time to make two adult meals a day, and where does the time go?

So I've got things I'll be addressing soon, some stories I've been meaning to get into a readable form, and I hope I can make it happen in the schedule soon.

Thursday, September 6, 2007

A very long line

Tuesday evening we went to the visitation for BT. We arrived at our church at 5:30p. It is quite a large place, keep in mind. The parking lot was almost full, looking like it does on a Sunday morning when more than 1200 people are in the building. The visitation was slated to go from 4 to 7 pm. When we arrived, there were probably 200 people in line before us. The line was coming from the "big room" or auditorium where the family was at the front near the stage, all along the side, out the door, around the classrooms that line the outer walls of the big room, and down a long hallway. I couldn't believe it. I've never seen anything like it. A huge line of generally quiet people, just standing. Many not talking, some greeting those around them that were familiar. We were fortunate to walk in with another couple, friends of ours, so we had someone to chat with as we waited. Every few minutes the line would shuffle forward some. But there was a fairly constant stream of people getting in line behind us. As people would pass, they'd say hello to a friend here or there, greet someone they obviously hadn't seen in a while, and some would simply walk to the end of the line. It was good to see so many we knew, most of whom we don't get to see often.

After we'd been there an hour and a half, we were just getting to the doorway of the big room. As we made our way slowly around the perimeter of the room, there was a video montage of BT from baby pictures with BD and the rest of the family to pictures from 6 weeks ago with his kids. It was so moving to watch person after person hug each of the family members; BD and his wife D, BT's sister and her husband, father BB and mother R, as well as BT's children, J and K. Some were polite handshakes and well wishes with a pat on the back. Some were tight hugs that lingered and then melted into sobs. Then the line would move on past the open casket. Some would stop and cross themselves, some would just walk by unable to look, some would sit down on the row of chairs and bow their heads.

As we got closer, I began to think about what I would say. What do you say? Nothing seemed right. BD and D are good friends, and we want to be there for them. But when they need us most in a time like this, we feel most helpless. I hugged them all, trying to transfer all the strength and comfort I could. I stopped longest with R at the end of the line. How does a mother deal with this kind of pain? We hugged a couple times. We said a few things. She asked about Braska, who was with a friend in the back of the big room. How amazing is that? In this time of her pain over one of her children, she was asking about how mine was doing. I promised I'd bring her to the service the next day, and that she could be sure to see her at the lunch, and she smiled. I walked by the casket. Unable to look for long, because it just wasn't him. We left, three hours after we had entered the line. And there were at least another two hours of people remaining...at 8:30pm.

The next morning, Braska and I went back to the church for the funeral service. There was a significant crowd again, but not as many. I'm sure most people were at work. Our senior minister, a friend of ours, did a very good job. He was a friend of BT's as well, so it was difficult. But one of the most moving parts was when BD walked up on the stage to speak of his twin brother. He was barely able to get words out, but he was stronger than I could have been. He called him brother and womb-mate. There was not a dry eye anywhere among the large audience, man or woman. D helped him steady and then back to his seat. BD is a very strong person, physically, mentally, and spiritually. But that day, his wife D was his rock, and she held him all the way through it. Then BB stood up to speak of his son. He had such wise words of love, telling of the faith that BT had, acknowledging the struggles he'd faced, and recounting the love BT had for people in general, especially those close to him. Then K, BT's daughter, stood with her mother and walked to the stage. I caught my breath, because I couldn't imagine what she'd say. Her mother read what she had written to her dad that morning. It was heartbreaking, of course, but just exactly what you'd imagine from a daughter to the dad she loved.

When the service was over, I stayed behind at the church to assist with the lunch that was going to be ready when the family returned from the graveside. I waited just inside the doors of the building while the caravan of cars circled around the parking lot and north to the cemetary. I've never seen such a long funeral procession, and I've seen hundreds. As I walked out to the car to get Braska's stroller, the last car left the parking lot, and there was one long line of cars all the way to the stop sign almost a mile away.

I just kept thinking, both at the visitation and at the funeral, that if only he could have seen how much love people had for him and his family...how many people took the time to stand in uncomfortable shoes to hug his brother, mother, father, and sister... Did he have any idea how many people cared? I'm sure he didn't. What would he think if he could look down on those long lines? I'm sure none of us realize how much we mean to people really. But it was so stark a contrast to me, the love that was poured out in those two days versus the lonliness he had to have felt during those last moments. It made me promise myself that I would take a much more open and honest style to caring for those around me. I'll fail again, I'm sure, but I'll try even harder. Thanks, BT, for teaching me that much. I hate that it took this much pain for the love to come to the forefront.

When R arrived back at the church for lunch, she came up to me and Braska to say hello to her. Braska greeted her with a grin, and R said, "Thank you, honey, I needed that today."

God, please bless J and K. Help them always remember how much their father loved them.