Just RK

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 doctors have told them and for those mommies

I used to be in bed by 10 or 10:30 pm regularly.  And I was still feeling like it was later than it should have been. Now it’s been midnight or later for a few weeks, and it’s just wearing me out.  So why can I know that, think about it often, and still it’s not changing?  That kind of thing frustrates me. So instead of ranting more about it, I’ll go to bed. There’s a novel idea. Just for kicks… when do YOU usually go to bed?

If you’re one of the few who check in here but not over on Braska’s blog , be sure to pop over there and read the last few posts about our big, exciting changes.  She’s rocking a cup. Sporting a gulp.  And I’m really proud of her.

This girl is amazing. This girl is tolerating a very different way of doing things and she’s smiling through it. (Most of the time…) This girl has to work harder at taking a drink of milk than you  or I do during a one-hour workout.  But…This girl is doing it. And well.     This girl adores her big sister.  This girl can do just about everything better and faster than her big sister. But this girl cheers her big sister on consistently, celebrating every little thing like it’s a major event.     These little girls make me smile. These little girls make me crazy sometimes. These little girls frustrate me to no end on some days. But these little girls are blessings. Just as they are. Lord, give me the wisdom to raise these little girls in the way you know is best.

I referenced the tiny-ness of Braska in  this post (And if you haven’t seen it, you MUST !  Big news in our world!!)  So I decided to look back and see just how my girls measure up.  The Normie and the Downsie, not in comparison to each other, though that’s often fun, but according to the “official” growth charts. (ETA: In case you’re new…Yes, we affectionately refer to the girls in that way, as stated above. Yes, we know it might not be everyone’s preference. They are derived of love and pride in both of them, combined with the dry wit that lives in our house, and originating from self-advocates with DS who are proud to own the “Downsie” term for themselves and their close friends.) Braska was 7 lb 0 oz at birth.  At 1 year, she was 15 lbs. At 2 years, she was 19 lbs. At 3 years she was 22 lbs. At 4 years, she was 24 lbs. As of today, at 3 months shy of 5, she is 25 lbs 10 oz  and 36.75 inches tall. (That weight is also a BIG deal!) That ranks her far from even

SO much happening lately. A weekend of family reunion for my side of the family, followed by the next weekend of in-laws a-plenty for M's brother's wedding. That was this past Saturday. Tons of pics and stories and I'm sure I'll forget something I want to remember. I'm glad it all went pretty well, and I'm glad it's over. I'm worn out, and I'm ready for some simple family-of-four time at home. Not that I don't love our families, because we are pretty blessed as that goes. But wow, that was alot of time in a short little span. So now it's time to decompress! I'm working on getting all the photos/videos uploaded to share with all you lovely family members. Thanks for being patient. They'll be ready soon. In the meantime, here's some of the cutest moments of the day Saturday in video form. (If you have trouble seeing the video, refresh the blog page, and if it still won't work for you, let me know, please! Email is in

One of the forums I frequent (or in-frequent?) is Life’s Journey with Down Syndrome .  It’s a small, private board, very close knit, and many of us have met personally after getting to know each other online.  The group there talks about many things, and discussions are always interesting but respectful, which I appreciate a great deal. (If you’re interested in joining, fill out the registration, or drop me a line and I can put in a good word for ya with the “powers that be.” ) I don’t get to go over there and join the discussions nearly as often as I’d like, but today I popped in.  There was a thread about one of the topics I’m most passionate about… discipline/proper behavior, etc.  I won’t share the others’ comments since it is private, but since I wrote out a bit about my thoughts, I thought I’d share them here too so see if there was more discussion or thoughts that YOU might want to throw in… (Someone had asked about if the members disciplined their children with DS…the same

A week ago, on Sunday, after working the afternoon shift, I met up with a new friend.  I had a rough and weird day at work, and with the crazy heat that has been hanging around here, I was not at my best social self.  The girls also showed some of their less attractive features here and there.  But regardless, it was a nice visit with some very lovely new friends.  I’m so looking forward to the next time. This has been the strangest week, really very odd. I’ve worked more than I’d prefer in the last few days. Since I’m worn out and clearly not having any great wit tonight, I’ll refrain from giving my version of last Sunday evening as I’d thought I’d do. When the words of another say what should be said even more eloquently, let them alone.  Right? Please visit Trial Run for the great post that shares of our playdate.  And the pictures… you will not be disappointed with the cuteness quotient!  It was hot, but there was water.