The days seem to be running into the next. I am with Swan and her babies most of the time. Sometimes her husband will get out if work early.

DahTu has been coming up lately . . . at least a couple times a week. This helps tremendously. She seems to be able to get Swan to communicate. They always had a need for each other. Even when they were bickering . . . they always “made up” quickly. After all, they’re only ten and a half months apart. I used to call them my “twins”.

TuDah was up for the week as it was Spring Vacation. This was excellent for Swan. TuDah will be sixteen on the 28th of April. She has quite a bit on her plate right now . . . So much to handle . . .
So much to sort out in her young mind.

At the moment . . . all seems well.

I have been spending the majority of my time with Swan and her babies. I’m there during the days while her husband is working.

I have noticed, to my dismay, that Swan is in a world of her own these days. She sits there for hours . . . just staring at the floor. I try and interact with her but she doesn’t respond.

The doctors keep trying different medications and nothing seems to work. I’m not surprised. I’ve seen it all before. It just seems to be happening more rapidly this time around. At the rate the illness is progressing, I’m sure now that my daughters have Infantile Huntington’s. They’ve probably had it from their teens on and, I just didn’t see it. Or is it that . . . I didn’t want to see it.

DaTuh is not far behind. She struggles daily and she always looks like she’s panicking. I rarely see her relax. She’s always up and pacing.

I cry a lot these days. Sometimes, it’s the only way I can go to sleep at night. Maybe I’m trying to wash away some of the pain so I can be ready for the next day. It’s through the grace of God the Almighty I that keep going for, I know it is He who replenishes my strength!

The Verde Valley

I have moved back to the Valley and it feels so good to be home. It's wonderful being around the girls and the grandones again. I've missed them so ...

Swan is not doing so well. Her mental condition has deteriorated greatly. The doctors are continuing to try different medications to ease her suffering but there's not going to be too much more they can do for her; and I know this. Still, I can see the light back in her eyes since I have come home. I spend the days with her and the children while her husbands works. When he comes home, he cooks - cleans up from dinner - and helps Swan with the kids. He's such a good man and, I'm very proud of him.

DaTuh isn't far behind Swan in her illness. She visits Swan a couple times a week and they are good for each other.

It's hard to look at my babies and see them struggle with Huntingtons. The fear in their eyes every time they regress haunts me as I close my eyes to sleep at night. I'm powerless to help them and, for a mother, this is so devastating!

Still, I look at them in awe as they continue their struggle with Huntington's Disease ... and I am filled with pride as they show a strength beyond belief.

Christmas

I spent the Holiday with my children and their babies. It was wonderful.

J-ker, DahTuh and P.B. came to Swans and visited. Felt so good to be with all of them again.

P.B., J-ker and Swan went to karaoke with Boo and I. They sang their hearts out. I was so proud. I glanced at Swan a couple of times and saw that "empty" gaze in her eyes; (quite common for the illness) but she soon connected and gained her composure.

All is well ... and I am contented and blessed ...

DaTuh

I went to Cottonwood this past weekend . . . DaTuh came to see me. It felt so good to hold my oldest child in my arms. Words just cannot express what I felt.

She cut and darkened her hair. She looked beautiful.

We went to karaoke. She sang beautifully, as always. My heart felt lighter.

My Swan and I hung out at her home. I enjoyed her, my grandones, and my wonderful son-in- law. I didn’t want to leave. In April or May, we should be able to go home to Cottonwood. I ache for that. Swan and I have a wonderful closeness. Closer than we have ever been. I thank the Dear Lord for that. My son-in-law is awesome! What a man my daughter has chosen! He has so much on his plate right now . . . and he handles every bit of it. I wish his Mama could see him now. She would be so very proud. I know I am . . .

I haven’t heard from my DaTuh. My youngest, P.B. talked with me last night and told me that DaTuh is holding up but is realizing that her mental capabilities are fading fast. I know she’s scared. How I wish, I could reach out to her. If only for a brief moment on the phone . . . just to hear her voice.

I didn’t want this for my children. I wanted them to have full, happy lives. I wanted them to be able to experience so much more than what their short lives are offering. Dear Lord, please help me endure this pain. Please, keep me strong . . .

I spoke with Swan this morning, briefly. She seemed busy with her children so, I didn’t keep her long. Her attention span is also limited. I knew she was trying to concentrate on her babies so, I let her go before I wanted to . . . but, I spoke with her . . . told her I loved her . . . and in my heart and mind, embraced her tenderly . . .

I find myself wishing I could turn back the hands of time, to when they were all young, healthy and happy. I would break that time clock . . . forever keeping my babies safe from harm . . .

Wanda

A couple nights ago my sister of my heart, Wanda contacted me. I thought I had lost her forever.


Thank you Lord. You have been so gracious and loving . . .