Just RK

It’s been a very tiring 5 days for me. I’ve worked far too much for my liking. I’ve been more rushed and tense than I’d prefer.  I have had some wonderful moments within those days, don’t misunderstand.  But I’m exhausted. And tonight, after my girls collapsed into their beds, having been transferred in from their car seats where they fell asleep, I had the opportunity to go to bed. Early. Before 9 pm.  But I couldn’t.  I feel like I need to communicate something intangible. I have this urge to say something. And yet all words are empty and unimportant.  I’ve been sitting here with my laptop open, on, and my hands on the keyboard for almost an hour. And yet the words just won’t form any cohesive thoughts worth sharing. It’s not about my busy weekend. It’s not about my world at all.  I’m left sitting here in bed, uncomfortable. Wanting to speak words of comfort and having none.  I so desperately want to share just the right note of encouragement, ...

There are a lot of things that I want to remember someday down the line, when my girls are too big for baths, too cool for cuddles, and too chic to chat with me about everything that’s in their little heads.  One of those simple things is the fun they have in the bath together.  They are all about whatever they can do together. Alike. With each other.  And I don’t want to forget that. I don’t want them to forget it either.  So pictures like this will definitely be brought out to remind them of their camaraderie when they are sick to death of each other in about 8 years.  I can’t wait to see their eyes roll when these pictures show up at just the right moment. 

Denmark has stated openly that their goal is to be a society without Down syndrome. Here's the whole article if you are so brave. That statement in itself is disturbing. My friend, Michelle, at Big Blueberry Eyes (one of the first blogs I found and followed after Braska was born) posted some comments about this choice, and I'll admit, it's a very difficult post to read. It makes me mad. It makes me a little ill if I think about it too long. But I feel like it's important to realize to what extent the philosophies of disabilities in some countries have twisted. So check it out, knowing it won't give you warm fuzzies, but with the intent of knowing where "the others" stand, and how far they are willing to go. Then tell someone... be sure that those who might be around you and think like this out of ignorance have the opportunity to learn the truth about what life with DS means. And My Heart Cries Lord bless our efforts to share with the w...

KiKi has a bed. It is about 3 inches from this chair. And yet she often will hop between them from night to night. Sometimes she changes locations during the night. Tonight I got home from work and then cleaned the carpet in a couple of rooms. It's a very small house, and that is a loud machine. They were in bed already, but awake, and I figured the girls would quickly just fall asleep with the added, though loud, noise. (They have a loud fan in their room already. I have white noise issues. Must have for sleep.) I went to check on the girls and they were out. Braska in her bed where I left her and KiKi in the chair with Purple, her pillow pet. I suppose sleeping is better than awake, even if its not in the bed. Do your kids sleep in places other than their beds at night??

One week ago yesterday, Braska had her last tube feeding. I thought we were going to have to change that yesterday, as she really wasn’t in the mood to be drinking. I’ve said before, and it’s not overstated, that to make her mouth, tongue, throat, and all the incorporated muscles of lesser known names work together and allow for her to take fluid in and swallow it properly is a lot of work for her. It does not come naturally. It is not a reflex. She does not “just get it” now, she is working hard to get it. Very hard. At times, when she’s holding a mouthful of milk, just sitting there, waiting for me to take the sippy cup away, her eyes will go from side to side, her neck twitches and moves, her jaw slides from side to side or clenches a bit. It’s all like a bit of quiet chaos as she tries to organize everything in order to get that swallow done right, without choking, and allow more drink to come in. It’s a very slow process. Don’t think that she’s just up and guzzling do...

Hot Rod. Padre. Pa Beagle. Dad is what I call him most often.  And today he qualifies for the senior discount at the YMCA.  Congratulations! So here’s a little look back at when it was just us, and Mom, of course. But someone had to take the pictures.  From October 73 to Easter 75, when he was a preacher boy in his mid-twenties. Good times. And from June 2011… with Mom, Julia, and the girls.  Happy birthday, Dad.  Hope you have a super great day! And yes, you may link this on FB if you’d like to share your young handsome self with your friends.  (Happy birthday to Marci, too.  Wherever you are.  We still miss you.)

The overstuffed recliner is between their little beds.  When I sit there, I can reach each of them as they lay in their beds, holding one of each of their little hands as we say their prayers each night.  The room is only 9 feet wide. Tonight we prayed for their sweet dreams, restful sleep, thanking God for a good day, all four of us healthy.  We thanked God for our friends and that our sweet friend Jamee had a good day after a few tough ones.  We prayed for my friend Jennifer far away.  We asked for extra doses of comfort and peace of heart for our dear, precious friends who will walk painfully through the next 9 days, though all their days are harder without their prettiest little one.  We asked for lots of extra angels to be sent to those little ones who are mistreated or alone in places without mommies and daddies to love them.  We never forget these precious ones.  We prayed for the “tummy babies” whose mommies are scared of what the doctor...