Just RK

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...

(If you didn’t see the great video full of precious and adorable faces, including one I’m partial to, click here to go to the earlier post.) In our house… It means you get to wear glasses when your sister doesn’t It means you get to go to school and play with lots of the best teachers and therapists It means you sometimes get frustrated with what your body won’t do that it should It means that when you’re frustrated you get to spend extra time with Mommy or Daddy It means you’re loved absolutely to pieces. And that’s just the tip of the iceberg, of course. In a place far away… It means that even when there’s a mommy and daddy who are there to pick you up, money in hand, paperwork all filed, pleading for your life, a judge can say no. Just plain no. That little handsome fella just haunts me. I can’t imagine what his parents are experiencing. (Click here and then here for that story. They need your prayer support. Desperately. Please.) I still can’t comprehend th...

I’ve posted a few times about little Chrissie , adopted 6 months ago from Serbia, who had very dangerous heart surgery a month ago today.  She has had a very difficult 30 days, and overnight last night she finally got relief for her pain and struggles.  She is now “dancing with Jesus,”  as her mom posted this morning. I pray comfort for her family, and yet I am so happy that Chrissie is no longer fighting and hurting as she has been for these last weeks.  She was a very tough little girl, and she fought as hard as she could.  Now she gets to relax and enjoy the energy she always wanted to have…dancing and laughing and playing.  Here’s a clip from Lorraine’s blog from the moments before she went to surgery on 4/19/10.  Cherished pictures, no doubt.  She was a beautiful little girl and SO very loved since coming home to Texas.  And her family knows that they will see her again…and the dancing will go on forever! Please pray for this fam...

I’m all hyper and talking a million miles a minute.  I got a coffee at QT on the way in this morning and I now realize how long it’s been since I had caffeine! It’s making me very awake, and I’m typing extra fast.  And I think my husband—who wants to nap—is about to lock me in a closet.  But if you’re going to have an up day, why not pick a day when you have to spend time at a children’s hospital and just sit and wait… it’s a good day to be perky! Woo hoo! Oh, and by the way, even my praying has been hyper.  Good thing God knows about my caffeine issues.  He’s good with it.  He can still understand me when I’m jabbering on.  It’s the National Day of Prayer , ya know… so whether you’re praying for Braska or praying for Chrissie or one of our other sweet friends, OR if you’re praying thankful prayers that we live in this great country where our kids can have QUICK and high-quality healthcare…be sure to pray for our nation and it’s continued blessing...

Tomorrow is Braska’s surgery for ear tube placement.  Updates will be mostly on her blog , so FYI… if you want to keep up with all the action. (That may be profoundly over-exaggerating the situation.)  Since the tonsils and adenoids have not been excluded from tomorrow’s party, it’ll be much less involved.  There’s good and bad to that…but that’s for another time. I’ve got my mobile setup ready, though, so I can post random things here if I just get bored and fell like it.  We’ll see how it goes.  We have to be there at 645 am.  It’s a 30 minute drive.  I should probably take a shower before we go, in fairness to others in the waiting area.  Do the math—that’s going to be an early morning. Who knows what kind of gobblety-gook my mind will come up with… I mentioned on Braska’s blog and I’ll ask here… anyone got a story or joke they wanna share to give me something to laugh at, shake my head in amazement (or dismay) at, or just roll my eyes at w...

Many of you know about Carly's sad story . Michelle from Big Blueberry Eyes is organizing a great gift in memory of Carly for her family. When these things happen, so many of us want to "do something" but it's hard to know how to help. This is a great idea and will be so appreciated.

Shelley posted about 4-year-old Chrissie yesterday and I was so amazed at her story. We’ve been through open-heart surgery with Braska, but this little one’s situation is far above a “routine” OHS. Today she will have a very risky but necessary surgery to repair her heart in several ways. She is a miracle already, just in the fact that she is still alive. Her forever family brought her home on my birthday this last fall, so that makes her extra special, in my book. Please be praying that her surgery and recovery go well and without complications. Click her button above to read her story and to check on updates from her family. Edited to add: The surgery has had to be postponed due to Chrissie waking up with a fever today. It will be at least a month to be rescheduled. She is in a very dangerous situation with her heart in it's current condition. Please pray that she can hold on and be healthy so that the surgery can happen as soon as possible.

Our buddy Jace is here in St. Louis at our trusted SLCH for his AV canal repair today. Please pray everything goes well and that the marvelous docs are able to fix him right up so that he’s back to bugging his big sister LC in no time!

That beautiful little face has found a home in my mind in a way that few have.  Little precious Laynee. Jalayne Grace. A couple months ago, I posted about an accident that I’d read about that day on one of the DS forums.  I didn’t have much info at the time, but I was struck by the story in a way that surprised me a bit.  I remembered the precious face, and it hurt to even think about such a situation happening to this family.    I never had the chance to know her personally or see her giggle or watch her play with her siblings and cousins, yet I miss her in an almost palpable way. Recently her mother has started a blog to share their story, to talk about her sweet daughter, and to understandably grieve this new emptiness where such a joyful little girl once lived.  I’m riveted by this blog. The honesty with which Karol shares, the pictures of little Laynee—it is not hard to spend time there.  There is obviously sadness and remembering...

Thank you all for praying for L and her situation. It appears that a difficult choice was removed from her hands. To summarize, purposefully vague as it may be, a young mother had just yesterday found that she was carrying a little girl with DS. She came to one of the forums that I frequent, and we encouraged her as we often do with moms dealing with a new diagnosis. Her husband was not in favor of her continuing to carry the baby and gave her an ultimatum. She was having to choose between her child and her husband, and she felt she could not give up her marriage. Her appointment was today, but she has reported now that as of late this morning her baby's heartbeat is not to be found. She has had many losses previously, but I'm sure that doesn't make this one any easier. She wanted her little girl, but her family all around was pressuring her to end her pregnancy. I'm sad that that precious baby didn't have a chance to come bring a bright light to their world. There ...

I can't give you all the details. But it is a matter of life and death for a sweet child. Please pray for my new friend L and her horrible choice that is at hand this very day. Please pray. It's absolutely heartbreaking. I'm almost physically sick, and I admit I'm panicked for her. God knows the details, please just ask him to strengthen L and protect her baby girl.

I've been sitting here for over an hour. It's not that there aren't things to say, it's just that suddenly the blogging thing seems so superficial. For now, my thoughts and prayers will remain largely unpublished. Lord, guide our leaders and light our way.

Karen K sent me a link to a blog today. I get links to blogs from friends alot. Blogs that are funny. Cute kid blogs. DS blogs. Blogs with good music. Lots of blogs. Many of them, though, are stories of amazing families who are making the most of a difficult situation. This blog Karen sent today is much the same as some others. The tragic story, some might say, and the strong people who are living through it. Tomorrow, this very young couple is going to meet the son they've been waiting for and loving intensely for a long time. But it will be bittersweet as they know his time with them will be most painfully short. But here's what struck me... This story reminded me of why every single life matters. Even though this little boy will have such a short time on earth when he is visible and touchable and breathing air, he has made a difference that will NEVER be undone or forgotten in hundreds of lives. His parents' decision to grant their son life for as far as they c...

I just listened to a voice mail from my dad this morning telling me very sad news about my favorite musician, Steven Curtis Chapman . Apparently his youngest daughter, Maria, who was 5, was killed in their driveway yesterday when she was hit accidentally by the vehicle being driven by her older brother. Here's a full article with picture of the little girl and her dad. Here's a blog that's been set up in memory of her and for comments of condolences. SCC had adopted his youngest three daughters, and he has been active with promoting adoption and providing grants through his foundation for many years. I've seen him in concert many times, and since adopting his first daughter several years ago, there has always been a large part of the show dedicating to information about children waiting to be adopted all over the world. He is such a passionate person, artist, performer, husband, and father. And I can imagine from watching him beam about his little girls how truly dev...

This was posted moments ago. WEDNESDAY, JANUARY 16, 2008 12:12 PM, CST The following message is from Levi: I got to go home today! No more tubes, no more machines, no more doctors, and no more pain! I got to see my papa too, and he sends his love to everybody. Most importantly, I got to see Jesus. I know it's hard for everyone down there, but let these words give you home and comfort: "Let not your hearts be troubled. You believe in God. Believe also in me. In my father's house are many rooms, and I am going to prepare a place for you. If I go to prepare a place for you, I will come back, so that you may also be where I am. I am the way the truth and the life. No man comes to the Father except through me." I love you all lots, and I will see you again. Love, Levi Please continue to pray for this family as they mourn their sweet child. Thank you for all your prayers and kind words. It has meant a great deal to this family, I can assure you. I will pass on all comments ...

In the next few minutes, Baby Levi will be taken off the ECMO machine, and his family is there to be with him and see how he responds. The concern now is his lungs, apparently. Here's the report from his dad this morning. Please be praying for this tiny one. WEDNESDAY, JANUARY 16, 2008 08:42 AM, CST Well, Levi had an uneventful evening. His pressures are up a little bit and his acid levels are better today than yesterday, which is definitely good news. The main problem is not the heart, but the lungs, and unfortunately, that may be an obstacle too high to climb. Until the last week, his lungs have performed well, and they have had no reason to suspect any lung disease or anything else. However, Dr. Gandhi said this morning that the lungs are much worse than he thought, and that there wasn't much that could be done for them at this point. He's not sure if the cause is something he was born with (most likely) or just a natural result of sitting around in the hospital waiti...

Here's the update for Baby Levi today. Some encouraging news, but he'll need prayers ramped up for the next two days to Wednesday. MONDAY, JANUARY 14, 2008, 10:53 A.M. Ok. We got good news, which has the potential to be great news. Dr. Gandhi said that Levi's heart looked very good and that the pressures were pretty good for the 5 minutes he was clamped off on ECMO. If not for the kidney and another new issue, he would have been able to completely come off today. Because he was so full of electrolytes from not getting rid of waste, Dr. Gandhi didn't want him to start off life without ECMO behind the 8-ball, so he is going to hook up the actual dialysis filter to the ECMO machine and filter Levi fully. There was a new issue that has developed with his lungs, which may or may not be serious, which involves little air pockets (called bleps) which develop and run the risk of possibly bursting and collapsing his lung under the pressure from the excess air. Because Dr. Gandhi...

Please take the time to read about Baby Levi. For his precious life's sake and his parents. Baby Levi was born on November 29, 2007 at 2 lbs 5 oz and 15 inches. He has hypoplastic left ventricle and has been in the hospital since he was born. His father is a friend of mine from church camp back in junior high and high school, and I hadn't seen him in close to 18 years until last month. Levi is in the CICU at Children's where we go for all our specialists, so we've been checking on him often. He finally got up to 3 lbs 12 oz before he had his open-heart surgery this past Tuesday, January 8. He has had some severe challenges since and is still on the ECMO machine to help his heart and lungs continue to function. Here is the update his father posted this afternoon. SUNDAY, JANUARY 13, 2008 01:49 PM, CST Levi is having a great day today. His pressures are up and they have been staying up all day long. The only small issue is that he had a bath, which made him mad, and then...