World Down Syndrome Day 2011

3-21-2011 
For 3 copies of the 21st chromosome, unique to Down syndrome. In my opinion, creating some of the cutest of the cute out there. Don’t miss the video below.

World Down Syndrome Day.

Take the chance to tell someone a wonderful thing about someone you know with DS. Or share with someone how your views have changed now that you know and love someone with DS.  If Braska is the only person with DS that you know, be sure to brag on her a bit today. I don’t mind at all!  Feel free to link to the recent post about how far she has come since her heart surgery 4 years ago.

Today, make a decision to be intentional about making others aware that a diagnosis of DS does not have to be met with utter despair, it doesn’t have to be a death sentence, and it is not a reason to take an unborn child’s life.

Just tell someone. 

The IDSC for Life has put together a really nice video of some of our little beauties… I have my favorite in there, and a few who follow close behind her.  Maybe posting a link to this in your Facebook status or on your blog or Twitter would be a great awareness opportunity.

31 for 21: Education without alienation [Down syndrome, person first language]

I have had the privilege of getting to know some super nifty blogger buddies “in real life” (IRL if you’re a fan of the acronyms, which I am) versus just communicating through blogs and comments shared.  I could list a whole bunch of them, but for today’s purposes, I’ll highlight one of my faves.

Most of you are very familiar with Courtney, Justin, LC, and Jace and their ever-entertaining stories written in the dry, witty style that Courtney employs with ease. (And for what it’s worth, it’s not a show for the blog. That’s how she talks. It’s great.)

I’ve been blessed to be able to get to know them better since they come over here to St. Louis Children’s for a chunk of specialists for the squibs.  We’ve done dinners out, visits at our house, and I’ve been able to provide some tiny distraction from the fun of hospital stays when they’ve been here for a few days at a time.  Trust me, I am always the one who walks away more excited and blessed by the interaction. 

I’m still a tad starstruck, I admit it.  These two and their tots are really just a tad more snappy than most people, and the niceness is icing on the cake.

Anyway, this isn’t supposed to be all about my gushing affection for “ch” and her gang.  It’s about a conversation that we had last time I visited in the hospital, last month.  Most of the conversation was of a personal nature, and as usual, Courtney offered superb perspective and some good food for thought.  But the other part of the conversation was about a topic we all discuss occasionally, it seems.

When do we correct people for referring to  our “Down’s babies” or “Down syndrome kids”?  Or do we? 

There’s lots of talk about person-first language, and I’m good with that.  (I blogged a bit about it here.)I’m not opposed to speaking in a respectful manner, of course, but sometimes pushing the point can alienate those who are just trying to interact with us or our kids.  And alienating them does NOT provide opportunities for education about why you might feel it’s important to phrase things a certain way.

Courtney has done a great blog post that encompasses much of what we discussed that evening at the hospital.  She had great things to say then, and she’s sharing them here.  (Because I know a few of you read with your school-age kids, there is one PG-13 word used in a reference example. But don’t skip the article for that. It’s very worth the easy mini-edit.)

My favorite section is this…

And, in stopping you and correcting you I've established that you have to tiptoe in your references to my children.  I've implied that speaking of my children requires delicacy and careful treading.  I've implied that my children are different than most children you could easily and naturally speak about.

The bottom line is this for me…I’m not going to demand that strangers get educated and know the current PC way to say things JUST to interact with me or my children.  I am happy to be part of that education, but it takes a warm response and welcoming attitude to allow that to happen.   And as for caregivers and medical people, yes, they should know what’s considered “acceptable” but I’m still not going to pull an attitude that MY kid has to be treated with special (ahem) care in how you just talk about them in regular conversation.  If the opportunity to educate in a nice manner presents itself, then sure, I share the info with them.  But I am not going to walk around with what amounts to a chip on my shoulder just waiting for someone to have the gall to speak to or about my child and use their words in the wrong order.

As Courtney says, it’s gray and sticky territory.  I will probably always be in the minority on this in the DS community. (OR is it “community of those who have or love someone with Down syndrome.” Seriously?)  That’s ok with me. I’m fine with being on the fringe.

I just really feel like we have to watch our interactions with people and make sure that the education is happening WITHOUT the alienation taking place first and voiding the educating possibilities.

The grouchy kid.
The sick kid.
The pretty girl.
The rowdy boy.
The silly girl.
The hyper child.
The smart kid.
The happy baby.
The colicky baby.
The picky eater.
The whiny kid.
The helpful child.
The birthday girl.
The football guys.
The ballet girls.

It’s a natural part of our language to have the descriptor in front of the noun.  It doesn’t mean that what we have used to describe them is the ONLY element of their being. It’s just what pertains at that moment. I don’t think it’s fair to expect people who do not have the perspective we do to *just know* that in our particular situation it’s “not ok” to use the order they are used to.

Yes, it’s ok to educate, just don’t alienate and further isolate our community in doing so.

31 for 21: A special girl

Last night I took Braska with me to WalMart. She loves to go shopping, and she’s always happy to sit in the cart and say hi to people or point out various items or letters that she sees.  She’s a fun little shopping companion, and I realized while we were walking in that I don’t get to take her much anymore because I usually go when she’s at school in the mornings.

At one point, a lady from behind who had 4 little kids with her said, “Oh, she is SO cute!”  I wasn’t sure she was aiming her compliment at Braska, but then she cam around us a few seconds later and said, “She’s adorable! How do you keep her glasses on??”  [This is probably the most common question of ANY kind that we get when we’re in public.  Followed closely by “How can they tell what prescription she needs with her glasses??”]  I gave the general rundown of the fact that she’s had them since she was 13 months and just accepted them from day one because she could finally SEE things.

As that mom moved on, an employee there came over to talk to Braska.  Of course, she looked the lady over and didn’t talk for a bit.  People always ask a question and then repeat it about 4 times before she will answer… and she’s still processing the first time.  But I don’t get into “Hey, if you’ll ask the question once and pause for about 2 seconds, she will answer you.”  I usually try to get her attention and make eye contact and ask the question… what’s your name, do you have a sister, are you shopping?  Braska did finally tell her what her name was.  Then she pointed to my shirt, because I was wearing one of my NEBRASKA t-shirts.  And she knows that’s her name, so she was providing a visual aid for the lady.  I thought that was funny.

We finished picking up our few items and headed for the checkout.  As we were steering toward the line, a lady passed and said, fairly loudly, “It’s a special child!  You have a special little girl.”  Like I won something.  It was in that kind of celebratory tone.  She came up beside me and said that she just LOVES the “special ones” because they are SO sweet.  Braska smiled at her, with a hint of hesitancy because it was kind of in-your-face-niceness happening.  I agreed with her that I did have a special girl and she was, in fact, pretty sweet.

She went on and we checked out and headed for the door.  Just as we were passing through the did-you-steal-anything detectors, an older gentleman with an unidentifiable specialness of his own leaned over to me and waved at Braska. Then he said to me, “Hey, did she pick up the bill for ya today?” and he laughed.    I told him I always let her pay when she comes along.  He thought that was great and laughed again as he walked away.

These people were sweet to interact with us, they were honest in their interest or compliment.  They held no disrespect for Braska’s disabilities, though they noticed she was different.  They were not all genteel in their approach or up to date on the current appropriate way to say things.  But they saw a little girl who drew them to make a little connection, and that’s great.  I welcome that, and I won’t interrupt it to point out that their admiration needs to be said in a politically correct way.  To me, that’s completely ridiculous.

I am not a champion of all the right terminology.  This is not news for most of you.  I appreciate that these people wanted to engage us.  They could have said any number of “worse” things, “wrong” words, or words in the “wrong” order, and it still wouldn’t have bothered me.  I want nothing more than for Braska to get to be appreciated for being a little girl.  I’m not too concerned with how it’s said when the spirit is purely joyful and full of admiration.

Eunice Kennedy Shriver Day [Disability, Special Olympics]

Today is Eunice Kennedy Shriver Day (EKS Day).  My friend Jen tagged me to help spread the word about this day celebrating Mrs. Shriver and her contribution to the world through Special Olympics and so many other avenues.

I’m in a conference this weekend but I wanted to share a couple links for you to check out…

~~Jen has a post with more info and some great quotes here.

~~More good stuff from Michelle’s post at Big Blueberry Eyes.

~~SpecialOlympics.org has a wonderful spread for EKS Day with many neat links and articles.

Braska: Good sleep

Now that I’m feeling all better after my surgee, I’m back to sleeping really good.  I even sleep on my back sometimes now. And I’ve never done that before.


See my cool shirt?  Miss Julie got it for me from Miss Amy.

The only constant is change

The girls are home. They were very excited about their time with Grammy and they were excited to see me, which is nice.  They generally don’t seem to care too much if I’m around or not if others that they like are there. 

For those of you following the school saga, there’s another piece of the fun puzzle to add. 

Recap: Miss N was Braska’s teacher last year.  We like her very much.  Braska was assigned to her again this year, but in the afternoon.  That was a no-go with me.  So after the short-lived no-budging policy, they moved Braska to the morning…to Miss N’s class.  YAY! 

And when we thought it was all settled…. the phone rang again.

Miss N called to tell me that she has just accepted a new position within the school to work with the kids getting ready for Kindergarten, and I’m happy for her that she’s glad for the move. But we’ll miss her as B’s teacher.  She assures me that I’ll like Braska’s new teacher, as she was Miss N’s mentor. She sounds like a good fit.  We’ll get to meet her in a couple weeks.

So in summary… I’m SO glad we didn’t cave to the afternoon plan JUST to be with Miss N, since she wouldn’t have been there in the end.  I’m hopeful that things will go well, that Miss A will be just what Braska needs this fall, and that Jack also does great with his teacher in the room next door to Braska’s room, Miss B. 

Ask me if I think this is the final chapter in this interesting story… go ahead. Ask.

The ride continues… [Down syndrome, preschool]

I’m tired, and it’s late, and I had a nice evening so I want to go to bed with that peace to put me to sleep.

But I wanted to share the latest in the school saga.

Remember when I said yesterday that things can change quickly??  Late today the school called, a different contact, one that is more familiar with us and a person I respect for the work she’s done for us before.  She told me that after talking with a very wonderful member of Braska’s team and others at the school, they’ve decided Braska WILL be moved to a morning class.  I don’t know the details yet, who her teacher will be, if it will be an “early 3’s” class or a “3’s” class.  I told her I’d prefer the “early 3’s” option, and she was surprised.  But I feel like that would allow Braska to learn from her classmates, both those with IEPs and those without, and she wouldn’t be quite so much smaller,  possibly. (We’ve had some issues related to this, but I’ll have to talk about that later.)

I’ll know more next week.  We’re still thinking through everything.  But I’m glad that the school was able to make this adjustment.  It’s only right, in my opinion, to offer an option that will allow the child to succeed. I do appreciate their efforts.

Answering school questions [Down syndrome, preschool]

Several of you have asked questions in comments or emails, so I’ll elaborate a bit more about the school situation…

As far as why she was put in the afternoon class and if we had a say…  There was no request process or any kind of communication from the school until we received the call to tell us where she had been assigned.  We were told if we had any issues with it to call someone, and that’s what I did.  The person apparently in control of these things is who told me that there wouldn’t be any “shuffling” happening.  Obviously, had I been given the chance to put my 2 cents in, I’d have been very clear with this info about her needs at that time.  It never dawned on me they would choose to put her in an afternoon class.  It seems so very obvious to me that a child who has been noted as having focus issues in the classroom anyway would be assigned to start school at the least fresh time of the day.  I’m glad they wanted to put us in Miss N’s class, and if that was a special concession that I didn’t know about, I do appreciate the thought.  But Braska’s ability to perform and benefit from school is still primary.

(I’ll add in here that Jack is in the same boat as Braska. They were assigned to the same class, which we like, with the teacher we like, but not at a time that will work for either of them.  Julie may talk more about that on her blog at some point.  She is also quite unhappy with the situation, but she’s on vacation right now in the Sunshine State, so not sure when she’ll be blogging.)

We were told that “not all kids can go in the morning,” that they must have afternoon classes, so some kids have to go then.  I get that. But I have now talked to three other families who have kids at our school, kids with DS, and these kids are older than Jack and Braska by at least 6 months, and they are all in morning classes.  I was told by the school rep that they put us in with the teacher we liked, and  I’m guessing that this is why they did the afternoon class. (Her morning class is a “young 3’s” class…the kids who have just turned 3 over the summer. And that’s where the kids who turn 3 during the year go when they start. There are many of these “young 3’s” classes. We would have been FINE with them being in that class.)  I’ll state again…we DO like that teacher, and I had hoped Braska would have her again, but I can’t do the afternoon class even for that.

Because there was no communication or even a chance for us to preemptively let them know that afternoon was NOT ok, it would seem that there would be a back-up plan if the assignments simply don’t work for the child.  But it does not appear to be so currently.

I’ll also state again that part of me feels I need to go ahead and take steps to get her moved to the morning, if only to make sure that this process is corrected, that it’s not left as ok as is.  But for Braska, NOT being there, from the health standpoint, may well be better, so right now I’ll leave the battle to Julie.  She’s better for the job anyway!

It’s also been mentioned that Braska could nap before or after school…  After wouldn’t be an option, because she’d still be totally useless while AT school because she would be tired. And napping after 4:30pm, when we’d get home, would be just too close to bedtime.  And before, taking feeding time into consideration for her required schedule, would mean that she’d be needing to go down for her nap before 11 am.  And that’s just not going to work.  She’s still in her “go mode” at that point.  She hits her wall between 12:30 and 1pm, so she’s generally snoozing solid by 1:15pm on most days.

Regarding the question of if we have other schools to choose from… Nope.  That’s the easy answer.  Our school district contracts with this specialized private school for Early Childhood Special Ed (ECSE). Some call it a developmental preschool.  The classes are generally close to 50/50 kids with IEPs and kids without.  So everyone in our district who qualifies for ECSE goes to this school.  Another neighboring district has the same situation with the same school.  The third district in our area has their own ECSE building/program. 

Clearly, this is not the way I’d have preferred it.  But we’re going to move forward feeling comfortable that this is the right choice for what we know and have access to right now.  All this with the knowledge that things can change quickly, as we’ve learned once again.  But for now, we have a plan and we’re ok with it.

Early Intervention: Parent-centered team

Even though we are just outside of the Early Intervention system, since Braska turned 3 in November, I still get a lot of contacts and questions about the differences in EI services in different states and even other counties in Missouri.  Ria has been communicating with someone about this and posted their conversation on her blog today.  It sounds like this mom that Ria has been talking to has been put into the new model for EI that some places are transitioning to. She asked for some input into our experiences.

In St. Louis County, next door to ours, the First Steps Program has been trying out a new parent-centered team approach with new parents and transferring families.  From what I learned via word of mouth from a few in the administrative side of the system, St. Louis County agreed to be part of a testing or trial program with this new approach.  So far, I’ve not heard many families who are pleased with it, unfortunately.

To contrast the two, let me first summarize our experience: Braska had in-home therapies with First Steps from the time we moved to Missouri when she was 18 months old.   She had weekly speech therapy (ST), occupational/feeding therapy (OT), physical therapy (PT), and she also was seen by a nutritionist/feeding specialist due to her G-tube and difficulty gaining weight.  We made some adjustments to these over the past couple years and changed OT to every other week for a while, slowed ST to every other week for her last 6 months in EI since she was so self-motivated and ahead of the curve in her speech skills, we had PT at Braska’s school for a while, and we changed the schedule for the nutritionist as well.  But even in all this, we still had each provider of their particular specialty coming to treat Braska hands-on. 

When Braska turned 2, she went to what I called “pre-preschool” for two hours each Monday.  The teacher was a developmental therapist (DT) and it was a great experience.  Braska loved it, she learned a lot, and I firmly believe it helped her with the transition to preschool when she turned 3.  This was an added benefit to the home-based therapies, but I wouldn’t want to have it be the only thing.  I wouldn’t have wanted a group setting with one therapist to be her only treatment each week.  In some cases, I’m told that’s happening.

The guru for what is called the “team approach” around here is Robin McWilliam, Ph.D. (He has a blog here if you’re interested.)  He’s widely known in the field of EI for promoting what he calls a PSP or primary service provider model.  My paraphrase of the model, combining what I’ve read and what I’ve heard from parents who have been in it, goes like this… There is a team of providers—PT, OT, DT, ST, etc.—who meet regularly to discuss little Suzy.  They are all involved in working on her IFSP goals and they are all familiar with her.  BUT not all of them have met her, and in many cases they may not.

The feature of this model, also called the transdisciplinary model, is that there is one person identified as the “primary service provider (PSP)” and that person is who sees Suzy in the home regularly.  That person conveys all the instructions and thoughts or concerns from the team.  The PSP is usually the therapist who deals with the child’s most delayed area, as far as I can tell.  For instance, if Suzy is 2 and she walks well and eats well and can scribble, but she doesn’t use words yet, she will probably have the ST be her PSP.  What that means is that the ST will come to the house weekly or biweekly and work with Suzy, but she will not only do ST but will also address concerns in PT or OT areas also.  The PSP will research and discuss with the other team members issues that come up and she will then report back to the parent.  But all concerns about any modality will go through the PSP—the ST in this scenario.

To me, it’s clear why this approach is frustrating for a parent.  What if my child has two areas that are in great need of work?  What kind of delay in answers must come when a parent must ask an ST about the inversion of her child’s ankles and wait for the ST to talk to the PT and then get back to the parent?  Wouldn’t it always be wiser for the provider who is offering the advice to be the one actually seeing and working with the child?  From what I’ve been told, parents receive a lot of handouts and information for where to research and find their own answers for issues that might come up.  This is better than nothing, maybe, but it still pales in comparison to the idea of a person, trained in THAT field, observing the child and discussing the plan with you.

I’m told by those who know these things that being in this trial group is not mandatory in St. Louis County, though they don’t tell you that, and that you can opt out of this team approach.  But last I heard, they were putting 1 out of 4 new families, either by birth or by transfer, into the new model.  And there have been quite a few unhappy families.

We’re just one county over, and we did not participate in this model. I’m thankful for that, though I’m told that all of Missouri may end up going this route soon if some people in high places have their way.  We’ll have to see.  I hope that’s not the case.

I can’t imagine having to deal with one person about all our issues…G-tube, no/limited oral feeding, not walking, and very delayed fine motor.  I can’t imagine the strain on any therapist who would have been put in the position of our PSP.  I can tell you that I wouldn’t have been fun to be around much after about a week in that system.  It just doesn’t seem like the best interest of the child is in the forefront in this system.  Maybe some like it, maybe some have had success, but for a child with multiple delays and challenges, it just doesn’t seem to make sense.

Have you had experience with this new approach?  Thoughts?

Braska: 31 for 21: Go Spartan Sparkles!!

One of my friends sent this to Mommy today and we thought you would like to see it.  It was on the news tonight, so if you watch it you might have seen it there.

Click here for the whole story.  (There’s even a little movie in there.)

Cheerleaders in Iowa are doing a really neat thing!  I can’t wait til I can be a cheerleader!  My mommy started being one when she was little like me, too.

Here’s a peek at the super cool shirt we made for me and KiKi.  (Jack has one too, but he’s not gonna be a cheerleader, probably.  He’s gonna play football or something like that.)

Different States Early Intervention

Attention all parents involved in Early Intervention(EI): Help me out a minute, pretty please?

I've talked to a few of you lately about a variety of issues related to EI (AKA, Birth to 3, Babies Can't Wait, First Steps, etc.) and I'm finding that alot of the states are really different in how they handle things. I had no idea that there was such variety in the services and the processes.

So as a point of awareness for those who surf the web for this stuff, and just as a way to share with our fellow parents how things are where we respectively live (Maybe there will be something you didn't know about your own state!), can you take a minute a summarize a few points in a comment here? For the friends out there who have discussed this with me recently, can you still comment here so that we have the best grouping of info? Thanks!!!! If you've done a post on your blog on this, feel free to put the link in a comment too!

1. Some of you have mentioned looking for a preschool for your child who is about to turn 3. How does your city or district or region handle this? Do they assign a school based on your home location or do you have choices? For you that have kids in the 3-6 range, how often do they attend school and how have you felt about it?

We chose to live in the area of our city that we do in order to take part in our current situation. Some districts in our county have their own Early Childhood building that includes the preschoolers transitioning from First Steps. But we chose to be in the district that utilizes a special organization/facility that has 60/40 classes and in-house therapists. The whole place is designed for those with special needs but there are peer models there as well. (That's not the official description, but that's my simple summary.)This is where Braska goes to her pre-preschool currently, and she'll continue at that location, just going more often after she turns 3. We've been very pleased with our therapists from that organization that we've had already through First Steps and Braska really loves going to "school" on Monday mornings. So there's no "choice" for us to make, and I'm curious how that works elsewhere. It seems like several of you bloggers with kiddos this age are looking at preschools, and that's not part of our process, I'd like to know how it works.

2. Does your EI service provide equipment for you? Like walkers, specialized feeding things (Z-vibe, jigglers), or Sure Steps or orthotics? I've heard some even do things like swingsets!

Ours has a system (IL did too) that basically provides what is reasonable and needed when it is written up by the therapist and/or the service coordinator. I don't know the details, but I know it works. We got Braska's Sure Steps through this, and it covered it all. When we were in IL, they offered some of the feeding things, but I was too impatient for the paperwork and waiting for approval, so I just bought what we needed.

3. How does your EI work as far as payment from parents? Is it on a sliding scale based on income? Or is it a free service to everyone regardless of income?

In both MO and IL, it is a sliding scale. In MO, the fees are lower than in IL. I think the highest amount is $100/mo.

4. For those of you with 2-year-olds, have you had opportunities to attend training or information sessions about how to prepare for the transition to an IEP? What are you doing to get ready for this transition?

I've been blessed to know Adrienne, the leader of our local DS group and a friend I knew online before I moved here. I call her the IEP Queen. She is a wealth of information. She's involved with MPACT which gives training sessions for in-depth info on what to expect and how to be the best team member you can be for your child's IEP team. Here's a link to some great resources if you're interested. I'm trying to learn all I can so that I don't just plain accept what's told as fact but can make sure we get what we need and what's best for Braska.

5. And finally, how often do you have therapy and what services does your child get currently?

Braska gets weekly PT, speech is every other week, and OT is every other week and happens while she is at school on Mondays. She also has a nutritionist who visits twice a month and works on feeding and makes sure we're getting her enough food/fluids by mouth or via the G-tube.

Thanks, friends!! I really appreciate your time, and I think it will be very helpful. I am contacted often with some of these questions, so this will be a great resource!

Missing the point

I don't often like to reply to comments in another post, but sometimes it seems the way to go. No, I'm not going to rant, so if you're looking for drama, sorry to disappoint.

I'm in a bit of rush...ya know, new baby, toddler, and all...so this will be relatively short.

I'm not all that sensitive about this kind of thing--questionable jokes, using the wrong words, or words in the "wrong" order--related to the disability community. I'm in the minority in many circles that I travel in due to this. I understand the outrage at the "r-word" and I know the PC way to say things, but I admit I don't really react with the fervor that many do. That's just the honest truth. So this is not me flipping out about his comment about the Special Olympics. It's more about what it may indicate. And one thing I do agree with many of my friends and acquaintances in the world of developmental disabilities... it's not just a joke. And if it hurts someone, it's worth not saying. Check out Sarah's letter and see how she feels about it. She understands more than any of us can, and she has a great perspective.

To the anonymous poster(s): Yes, we all say things we shouldn't. I have loads of things I've said and joked about that aren't very nice. I'm not at all afraid of karma. I'm a Christian and I'm a Republican (barely) and I'm FAR from perfect. If you know anyone who is either of those, or Democrat, or agnostic, or whatever, and is perfect, please let's name them and celebrate them. That is not my point. And it has nothing to do with judging or forgiveness or anything so drastic... As I said in a comment on my friend Michelle's blog today, "It's amazing to me mostly because things said in jokes with our guards down usually indicate our inner thoughts. That's the part that concerns me. Only time will tell, in this situation." My issue is that it indicates more than the surface. Mr. President is know for his communication, "openness," and has more dyed-in-the-wool followers than I've ever seen. Yet when he is kicking back and chatting about something as insignificant as bowling, this is where it goes. No, it's not the end of the world. But I fear it may be a peek at something inside, possibly subconscious. I hope I'm wrong.

To Heidi: Hey girl! You're right. Anonymous comments are allowed on the blog because many don't have logins to Blogger or the other options. And I don't mind an occasional unsigned comment, but if a person feels strongly enough to carry on a conversation and make generalizations, it does seem right to be willing to identify yourself. I think I've proven in the past that we can agree to disagree and still maintain bloggy civility.

To Jason: Dude, you rock. I'm always glad you've got our backs, especially since you guys are unconditionally adoring fans of our Braska girl. That means alot, my friend. And your second comment... right on. You GET it. Thanks!!

To the rest of you, commenters here and via email: Thanks for getting it. Thanks for knowing me well enough to know that I'm not lynching the guy, just making an observation and hoping for better things with the knowledge gained from today.

Danger, no speech writer!

This may be a good reason to go back to the policy of not appearing on this kind of show as a sitting President. Braska may "just" be in the Special Olympics some day (which is FINE by me), but she can say "gaffe" already.



Summary (In case you couldn't hear it)
BO: "I bowled a 129"
JL: "That's very good."
BO:" It's like Special Olympics or something."

Wow.

Why EVERY life matters

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 can control it has impacted SO many people, even the doctors, nurses, and staff that have walked with them through this journey. We will likely never know how far the ripples of their decision and committment to their son will go, but people who are changed tend to promote change in those around them, and it continues, and the world is changed in the process.

This is one reason why I am heartbroken when I hear of someone receiving a prenatal diagnosis of any number of types and choosing to abort "for the sake of the baby." That life has a purpose. It belongs to a child whose existence is no accident. There is a specific reason why that baby is given, though we may struggle hard with the details of the "why" sometimes. This family was talked to about "terminating," but they knew they could not. The end result may be the same, but this child will rest in loving arms as his parents are able to cuddle him for the short time he has. His parents know this will be horribly painful, but they are doing what parents should do at every opportunity, putting the best interest of their child ahead of their own comfort or convenience.

I want to say so much more, but it's getting jumbled and poor, so I will simply say this...we may never know how our faithfulness in difficult situations affects others, but it is clear that it does. This family does not know me at all, but simply spending a couple of hours learning about their family and the struggle for their son's life has made an impression on me that will remain. Now I'm telling you, and hopefully you will find the same. Baby Isaac has made a difference, and he is just tomorrow getting to be held by his parents for the first time. His life matters.

The blog is He Will Carry Me and it is worth the time to read their story and their phenomenal example of truly trusting God with their most precious one. Many of you will identify with different parts of their story. A most touching aspect is the Dear Isaac compilation of letters to the boy from his mother. Even in a sad time, there is encouragment and hope. Real hope. I don't find this depressing at all. It is sad, absolutely. But it's that HOPE and trust that makes the difference.

Please join me in praying for this family as they take these next steps through tomorrow and whatever it may hold for them. I believe that we are shown things when we need to see them... there is a reason Karen sent this to me, and there is a reason I felt so compelled to share it with you. Don't miss out on the blessing this could be for you, now or down the road.

And hug your little ones an extra time today. Or two.