24 weeks and 1 day

12 years ago, I was scared out of my mind with a newborn the size of a Beanie Baby. You can read the story of R2 here. 


A friend of mine tweeted today "Would you trade your memories for the ability to see the future?", and you know, that is deep and has many levels, but my immediate thought was, if someone had told me the future back in the day, I would have run like heck. 

You don't know what you're capable of until it stares you in the face. And the last 12 years of loving my son, serving my son, have been rich. I wouldn't have known that. I would have said I couldn't handle it, the medical stuff, the fear, the recurring sadness of having a brain-damaged child. I would have been so wrong. 

I wouldn't have understood what it means to learn to love someone who can't really give back. I wouldn't have learned how to cling to Jesus in the very darkest moments, perched in a hard plastic chair while all the doctors came running and the alarms exploded. I wouldn't have known how Jesus could be so real, so tangible when I came to the end of myself. 

I wouldn't have known the pain and the sweetness of dying to myself as I laid down my plans and expectations for my child, and accepted his "normal". 

I wouldn't have known that joy is so rich when you work so hard for it, that a single word, first steps at 4 years old, just his being able to identify his plate and cup, could thrill me. 

I wouldn't have known, so I'm glad nobody asked me. I'm not special or chosen, I'm just a mom, and I'm learning how to live and love in this new reality. Like I said, you don't know what you're capable of. 

Happy 12th birthday to my little miracle. 

It's 10 pm at Children's Mercy, and there are two of us in the elevator. It doesn't take more than a glance to know we share membership in the fellowship of mothers with really sick kids. She carries the weight under her eyes, so either it's pretty new or it's gotten worse. I'm an old hand, 31 with the posture of a 50 year old. I have been finding vending machines in hospitals for over 11 years now.

She wears socks with sandals. It's not so much a fashion statement as a necessity. She will slip into a dark, cold room and sit tentatively in a vinyl recliner until the beeping is consistent and her child's breathing settles into a pattern. When all is calm, or as calm as it will be, she'll slip the sandals back on her cold feet and slip quietly out, to find food or to make a phone call. 

Tonight, I'm the lucky one. We're here for something routine, fairly non-invasive, and he's healthy, all things considered. She carries the heaviness of a child's fear. I don't have to say anything, because our eyes meet and I understand and she understands. It hurts and it's beyond exhausting, and you can't know it if you haven't walked it. I know stepping out for a grilled cheese sandwich could suddenly, shockingly be goodbye, and so does she. 

We are mothers, and we will wait quietly for the bleeding to stop, for the crisis to end. We will find reserves of strength we never knew existed as we fight for our children. We will put them in the car and take them home with a surprised kind of joy, every time. We will be so, so thankful for today.

If you are a cyber-stalker, then you already know that we took R2 to the dentist today. I know everything about everyone, because I read my facebook home and I have a photographic memory. So if you ever say something to me and I'm all like, I know, it is not because I have an entire wall in my basement filled with grainy 8x10 photos of you walking into 7/11. That is just a coincidence. What I'm getting at here is that that some of you already know what I'm going to say, and you're not even Dionne Warwick.

We went as a family, because this was a dental appointment and the likelihood of Total Spazzing was way, way up there. I called last week and explained Total Spazzing, and they agreed to use nitrous oxide (laughing gas) for the exam. Still, TS was not ruled out.

I had to stiff-arm my way around a little bit today, since the dental assistant was a little skeptical of the tantruming power of the mild-mannered tiny child in spectacles and a sweater-vest, but once the dentist came, he just took my word for it and gassed him. Also, Dr. Genius used a toothbrush for the exam. Is that brilliant or what?

R2 was a little nervous, even with the gas, but the MOG talked him through while I hung back, trying to keep my stress over in the corner since some people thought I was affecting the atmosphere. In addition to minimizing my atmospheric impact, I also tried to keep the other 2 kids in check, which involves a lot of whispered threats and attention redirects.

When it was all over, R2 and I were both greatly relieved. Oh, and his teeth are as jacked-up as I thought, but no cavities- so we come back in 6 months to start talking strategic teeth removal to make some room in his tiny mouth.

Oh, what's that? I owe you a blog? Well, maybe you owe me some comments! See, see how it's gonna be? All right then. Fine.

So, back to Friday. We drove to San Antonio from Dallas, and did our thing, which involved massive amounts of barbecue and then setting up and such. I did my duties and then stood by the door like some kinda puppy in the window. Finally, the convoy with my children arrived and I went and seized them and got a little choked up with no actual waterworks. It was such a relief to have them near me again.

Saturday we drove back to KC with JM and Andrew and our kids. For 15 hours. In a minivan. Richy, Jessica, Andrew, JM, R2, Toby, Brynn, guitar, suitcases, pillows, blankets, etc. Basically, we brought everything but legroom. For 15 hours. It was fun.
It's good to be back in KC, with my house and my bed and my babies. I might even be inspired to write some fiction in here, if I get some kind of sign that someone is reading this...

Today I went up to the Junior High to meet teachers and do Richy's IEP. That's right, I said Junior High. As in I will be putting my kid who still wears diapers in JUNIOR HIGH. Cue nervous. It was a good meeting. I really like his teacher for next year, even though it seems like he will need way more independence than he has now just to make it in there. That's part of their goals though, eventually. To prepare him for more independence, to transition to adulthood. I think this would be easier for me to process if he were bigger than a 5 year old.

The goals they made last year were fairly lofty, but I didn't argue because shoot, why not shoot for the stars? Anyway, this year the goals are more like, be able to identify numbers 1 through 5, learn how to sort by color, etc. Pretty low but very realistic.

Now, that's it. That's all I have to say and I'm tired now. Comment and inspire me to inspire you tomorrow.

I took R2 to the ENT today. Back when we made the appointment, we knew he was having constant ear infections and his tonsils looked problematic. By the time we actually HAD the appointment, he'd had his sleep study and we knew for sure he would need his tonsils and adenoids removed, and probably tubes in his ears. So basically today I just nodded and smiled and signed stuff that I already agreed to and such. Did I tell you guys about his sleep study? He stops breathing 38 times an hour. Every single time, he wakes up. So he is not sleeping at all. Plus, with having 4 or more ear infections a year, with an average of 2 months for the fluid to drain and normal hearing to return. So he's hearing poorly for an average of 8 months out of the year. No wonder he's grumpy. He has a tonsillectomy and adenoidectomy scheduled for mid-November, and we added the tubes to that.

In other news, today during Toby's "quiet time" he found my computer, went into my facebook and recorded and posted 2 videos of himself. I think I have a busy 16 years ahead of me.

We leave tomorrow for Texas. Today we bought snacks galore, in an attempt to save money otherwise spent on gas station snacks. I doubt my own theory. I hope to come up with some more fiction tonight... I have several tracks this could take but I am undecided.

we had R2's belated birthday party at Chuck E Cheese last night. It was just our little family and Daniel and Hannah. I didn't get any pictures of Toby because he was a blur moving from game to game all night.

Fun was had by all the small people. I didn't have that much fun personally, because my kids evidently have sensitive stomachs- I will not elaborate, as I would like to forget.

Anyway, we ate pizza and had cupcakes and used a LOT of tokens and won some little prizes and then we were exhausted and we went home. The end.

Today is R2's 10th birthday.

I am copying and pasting this entry from a few years ago- it's a good one and my brain won't start up today.

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10 years ago today, I was in a hospital bed in Houston... it was my 4th day of bedrest after my water broke at 23 weeks and 3 days gestation.
At some point in the afternoon, my contractions started coming more regularly. I tried to ignore them... but somebody was ready to come and meet the Yablonskis.
After a little while. it was obvious that they had done everything they could do to stop labor and it just wasn't safe anymore. So off they wheeled me to the delivery room.

It's really a blur. I remember looking up at the ceiling as they wheeled me through the doorway and down the hall.

Then I was in a different room with my mom and Richy I. Richy and I were both so scared. This was our first baby, our first pregnancy and everything had been normal until my water broke...

So I laid there and Mama prayed and came in and out as there was a waiting room FULL of Yablonskis and friends waiting for reports. Richy (the big one) cried and prayed and sang and almost passed out... He ended up out in the hallway for a while. I remember being in the room, just waiting for something to happen. A woman was screaming hysterically next door, and I had various monitors beeping and printing, and Daddy singing in the hall. And through it all, the steady thump thump thump of a very tiny heartbeat.

When he was born, all of us just held our breath for a moment. I remember thinking "Is he alive? Is he alive?" There is just a split second memory in my mind of a tiny gray body being lifted away from me and then the smallest hoarse little cry.

Even in the insanity of the situation, relief flooded us. We just wanted to hear him cry. And then he was being wheeled at high speed down to the NICU, to spend his first hours being intubated and really, kept alive by Jesus and the medical team He worked through.

I saw him hours later, when the epidural wore off. I was so shocked. He was so small and red and I was so scared. I couldn't even talk to him... I just cried and cried. I had Richy wheel me back out in the hallway, where Mama was waiting to comfort me. " You better SNAP out of it!" she said. "That is YOUR baby in there. Now, you go back in there and talk to that baby!". Soothing words, those. So I snapped out of it and went and talked to my baby.

It was a scary day. It was emotional and it was hard. But every minute since he was born, he has blessed us.

He is the most pure, loving child I have ever seen. I don't even deserve the sweetness and trust he has. I am so blessed.

And I am so, so glad beyond what I can express that he cried. And that he fought his way through those 4 months in the NICU and that he is still such a fighter now.

a wee cry
and then beeping
and then more crying
and then you awe holy....
Oh ki gosh!
and singing
and singing
and singing
and praying
and laughing
and telling Buzz what's up
on the phone
banging loudly on the piano
and singing, hands flapping
the sounds of you
what joy

Happy Birthday, Richy.


This was the first picture we took of him. I remember thinking, someday we'll put this one up on a big screen as a testimony. He was 12 inches long and 1 pound 5 ounces.





That's his beanie baby, and Richy's wedding ring fit around his arm. He was a week or 2 old here.

We wrote these Scripture cards and taped them to his incubator to encourage our faith (or denial, some said)

Today I took Toby and Brynn to McDonalds. They did exactly what a 2 year old and a 3 year old should do, and they were good and funny and smart. Somehow I ended up grieving. 

I wish R2 was different. That is something I rarely say that is absolutely true. I wish my firstborn was normal. I wish he hadn't been premature, I wish he didn't have brain damage. I wish he was perfectly normal like his siblings. 

Should I watch my babies play and grieve my loss? Maybe not. A wiser person would probably recognize the brevity of this season, and embrace the opportunity to watch them. I am not that person today. I miss what Richy should have been. 

Sometimes I see glimpses of him, through the fog. Yesterday he was sitting on the couch during naptime, holding M&M's in his lips (like a tongue) and laughing at himself. I started laughing too... it was a glimpse.

The thing with him is, it's a continual loss. I mean, we will go months or years just accepting him and helping him and celebrating small victories, and then it hits us that he will never outgrow this and there's a season of mourning again.

Maybe someday I will find peace and acceptance. Just him, for who he is and be okay with it. I'm sure I will.

ALL RIGHT! Shoooot.... you'd think I was getting paid for this. 

As I write, there are two naked toddlers watching TV and a very mad little boy laying on the couch. I don't know why he's mad. It is one of the continual frustrations for a mom with a non-verbal child. As to the naked toddlers, the girl-child has a rash I am trying to let air-dry, and the male child is going to be potty trained so help me God. And clothing hinders him. 

I plan on taking on many of your suggested topics, on a day that I don't have my own topic to discuss. Today, I want to whine. 

R2 has been home sick for several days. He had  a seizure a couple of days ago, which we didn't catch. We only knew because he couldn't stand and was disoriented when he woke up and then he slept all day. So it was a minor one. Since then he's been running a low fever, which is no big deal for a normal kid but a real risk for us. So I took him to the doctor and she thinks he just has a cold. Which is fine, but the fever continues. Stresses me out.

Waaa... right? I mean, he's the miserable one. But he doesn't have a blog to whine on, and I do. I just wish he could talk. When he was born, I just wanted him to live. And I'm so glad he lives, and does so much more than what was predicted. He's already a miracle.  I just get so tired sometimes of being locked out of his world. 

In perspective, his disabilities are minor. And I am a wuss. 

Let this be a lesson to you. Clamor for a post when I am in a whiny mood, and voila! whiny post. 

This is the new table... I really like it, except for the flowers. I figured they would come off via Magic Eraser, but no. This table is, to put it in car dealer vernacular, pre-owned. So it has some chips and scuffs and scratches... I toyed with the idea of sanding and re-staining, but really... we paid 60 bucks for a table and 5 chairs. Good enough.
It's actually very soothing to me to be able to sit at the table, all 5 of us in one place. We've only been able to do that at restaurants before... feels very family-ish.
Thank you, Jesus and Craigslist.

In other news, we are considering getting a scleral shell for R2. Wot's this? you say... make 'im a turtle and such? Uh, no. It's a mix between a false eye and a contact lens. A shell that fits over the disfigured eye, that is painted to match his good eye. We actually meet the ocularist next Wednesday. This is something I've wanted to do for a long time, but it brings up issues... like, how traumatic is the process... weeks of wearing a "conformer" to shape the eyelid, and then putting in the lens and having to take it out at night and clean it... for someone who might not even comprehend all this.

Gut-level though, I want this for him. I HATE it when kids are scared of him at the playground, or say mean things. And that happens a lot. He doesn't seem to be aware of it, but surely at some point he will... and Toby will, soon.

And he's such a handsome kid. I would love him to look whole. So is this about me? I hope not. We'll meet the doc, talk about it... learn the pros and cons and see if this works for us. I hope it does.

Today is Richy's 9th birthday, and I should put some thought into a post about him. But we're about to jet out of here, so I'll just give you a little taste of the beach pictures. It was a blast. Unfortunately, I am now a bright-ish coral color from the knees down and on the old shoulders. Thank God I'm not a bikini type. That would be quite a bit much more skin for frying. More tomorrow on the beach trip.

If the question is why are we some kind of mutant retro family, the answer is, I don't know. I never realized we looked like that.

You may have noticed that most of my posts lately include a picture. This is on the express demand of the MOG... and it works out, since I take about 12 pictures a day.

Today we have a neurosurgery appointment... these are quite boring, since everything they need to know about is inside his skull. Or thereabouts.

So we'll spend the day dressing and bathing all thirty kids, and pack them in the van and drive around forever and unpack them and their paraphernalia, and walk around hospitals forever, and sit in waiting rooms and use gummy snacks for bribes, and color and beg Toby to STOP already, and so on.

All to get in the room and tell the doctor, no vomiting, no headaches or swelling or any other sign of shunt malfunction. We will repeat this information to the desk clerk, the decoy doctor, and finally, the neurosurgeon.

Nobody will believe we know anything, and they will give us a pamphlet we could have written about shunt malfunction. We will try not to be snarky and say that our child had a shunt while they were still in medical school. And finally, we will all smile and shake hands and pack all 400 kids and go home.

Tomorrow, we see the neurologist. That's a little more interesting.

Oh, and American Idol? Yessss.... the best man won. Now I will have a TV hiatus until January.

I freely admit, I am a bubble-bath-er. Some people smoke pot to relax, some people rip off convenience stores. Me, I immerse. I typically buy some kid bubble bath (Elmo, for example) because it has more bubble power and it smells good. Oh, and it's WAY cheaper. Somebody else who lives here could buy me expensive bubble bath, like, oh, I don't know, raspberry from Bath and Body Works. In the shopping center with Target. Over by Starbucks. But I don't usually buy that kind for myself. Anyway.

Last night R2 decided to pour an entire jug of bubble bath into his bathwater. Why? Who knows... the workings of his mind are unsearchable. I walked by and saw the jug floating in the hot pink sea. The strawberry scented sea...

I cried out with a loud voice, but the damage was done. So I thought, "Well. I guess he'll just get really clean". The water was already off, and I did not foresee further bubbl-age. Except the excited flapping of the hands.... for an extended period of time (the boy likes his bath) created a fortress of bubbles... when I walked in there for the ceremonial washing of the hair, I was taken aback. Wow. LOT of bubbles. I let all the water out in hopes the bubbles would subside.

During the draining of the tub, I went back in my room and watched the opening of American Idol. Toby danced wildly during the credits, and then kinda disappeared on me. A second later, I came running at the sound of panicked screaming from the bathroom. Evidently, Adventure Toby had lost his balance and taken a header into the bubbles. I gotta tell you and CPS... I did not get him out immediately. Oh no. I called the spouse and pictures were taken... as soon as I wiped the bubbles off, he was gone, back to Idol.

So, I washed R2's hair and made him get out, much to his disgust, as there was still a mountain of bubbles to look at. But, all was forgiven once he realized Idol was on.









Speaking of Idol, I fear that my candidate will not win... David Cook (the rocker) didn't get great reviews last night. BUT, if my 5 texts count for anything, (and they don't) then he will be crowned the new American Idol tonight and get to sing a horrible, spectacularly bad song tonight.

Today R2 has his first pediatrician appointment... we have to get his seizure meds refilled ASAP and the red tape has been obnoxious. So now we are all good to go, we think. I hate first appointments for him... I have a chart summary for his first 4 months of life, but I still have to say most of it... and he was SO sick... he had every preemie condition but a couple, and it's a lot to explain.

He doesn't mind... he thinks it's fun if I warn him ahead of time. "Oh boy, Richy! She's going to look inside your ears! Isn't that funny??" and he giggles his way through. It helps that I don't make him get shots. He has been hospitalized and IV'ed enough to be traumatized... I'm so glad he's not.

Anyway, that's today so I have to brush up on my medical terminology. I have doctors to impress. ;)

Smartypants! 

Submit your medical questions and I will answer them on Monday! Or another day ending with Y!

Disclaimer: I don't know beans. But ask away!

also, Richy is updating over here something like daily. Check Radiant Worship blog!

Last week, I guess Friday, R2 was out playing in the backyard and he drove his little car into a rut. He then proceeded to get very very mad and bash his head into the steering wheel approximately 5000 times (exaggeration) before I made it across the yard to stop him. At the time it was pretty crushing to me, I hate it when he hurts himself. Now, it's just one of those things... you deal with with a special needs kid.
The problem is, he bruised his head pretty magnificently. As in, a dark oval bruise going from his hairline to the top of his nose. He looks like a Klingon. He doesn't appear to be in any pain... he has forgotten about it. But we, the family are probably sequestered here all week until it heals... the police and whatnot.
Last night we went out to eat to celebrate our tax return... we made him wear a baseball cap. He really hated it. But he wore it.

I don't know how we're going to teach him to cope with his frustration... we will have to figure out something. One thing that occurs to me, is controlling MY frustration... when I knock into things 10000 times a day, when I drop dishes, etc.

So that's that. A week in. Maybe I will finally go through all the clothes and get rid of stuff. More stuff. Again.

I need to be starting lunch now. Which means washing a LOT of dishes. So I blog.

We bought several locks yesterday, primarily designed to keep Toby in the house. I wish I had one to keep him in his room at nap time, but no luck. We had to buy high locks, because he has figured out how to work the doorknob covers. He has also figured out how to drag a chair around and climb to get high things. So we'll see how long the high locks work.

Last night I was making dinner, and R2 came in and started hugging me. I said, "Awww... you love your mommy." And he says, "I love sandwiches, mama..."

In other news, it is snowing today. It was 40 degrees when we woke up and 22 degrees when we finished breakfast. We were kind of hoping for a blizzard, just for variety, but all we got is snow flurries. 

And now I'm hungry so I guess I have to clean the kitchen. Tomorrow: existential thought Wednesday.

Here we are... in such a cute little house with deep snow all around. What the heck is my life? I never even considered moving prior to July... God just orchestrated this.

It was a smooth trip. Toby sang and played his keyboard and talked and watched cars go by and was pretty happy in general. Bean slept most of both drives. We drove 8 hours the first night, and stopped and stayed with Nate's family in Tulsa. Then about a 4 hour drive yesterday, and then a couple of frustrating hours driving trying to find a bank, and the realtors. Finally we got here. It's a pretty, small house. Beautiful wood floors and everything is freshly painted. Toby likes to run the wood floors from one end to the other whilst shrieking. So he's all settled in.

Then it was off to the airport to get Grandma and R2, who had had adventures all day waiting in airports, and getting delayed, and switching planes and so on. All of which R2 thought was VERY exciting. He was so excited when he and I were in the backseat of the van, he was using words and telling me about the airplane and the sky and all of his adventures. When we got to the house, he was really curious about the snow, but me, not so much. Maybe I'll let him play with a little snow today, when the SUN is out.

Now I am cowering in my bed, afraid to face the cold floors and try to find everything. The boys are still sleeping, or frozen.

So there you go. We made it, and today is the first day in the Big Winter.

I'm off to Target to give the manager what-for. Updates later!
Actually, I'm not going anywhere just yet. The MOG has all the keys, and I have to wait for him to hobble across the street and bring them back.
Long story short: police were beckoned yesterday because of R2's "injuries". They let us go, no problem. But I need to do a little education about the difference between abused and special needs children. Grrr.

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So here's what happened. R2 has a mark on his face from where he smacked himself during a tantrum. So yesterday, we went to Target just for the sake of getting out of the house. We shopped for an hour or so, and when we left, the police came and parked behind us (3 officers) and said that someone had called because there was some concern about R2's injuries. Right away, I thought of his cheek, so I explained he hit himself. Then I realized they were also talking about his eye, and his limp. So I explained the situation, and I showed them his itty-bitty eye. I think the policemen were pretty embarrassed. They kept apologizing. So we drove off and I see them talking to a Target manager type on the sidewalk. I was so embarrassed, and scared and just shaken up. But the more I thought about it, I remembered that same manager talking to me in the store, seeing if I needed help finding something or whatever. So, I'm thinking she's the one who called.

So I decide to go up there today and talk to somebody because I love Target. And I want to keep shopping there. So I get the decoy manager (you can tell these things) and I am telling her the story and how upset I am. so she calls the real manager. Who, was on duty yesterday and can assure me it was not an employee who called. They would have had to run it by her first. But she and the decoy manager feel terrible and they can't believe it blah blah blah. So, it must have been an overzealous and not terribly observant customer who actually called the police because of how R2 looks.

It makes me sick. And nervous to go anywhere. Ugh.

Answer the poll! Over there -------------->

Today I have to drive downtown to take R2 to the neurologist. It makes my stomach all nervoussy. Not, all the brain stuff. That's just ho-hum. Noo... it's the driving. I hate driving to Houston. Today will be my first time ever to go with all 3 chilluns. Once I get there, it's just like being anywhere with 3 kids. But the driving. Eek.

Did I mention the MOG sprained his ankle on Thanksgiving? (delete all jokes and references to wus-ishness) Yesterday we finally tried to go to the doctor. But he has insurance, which makes it almost impossible to go to the doctor. First, I called the PCP on his insurance card. And, true to form, all heck breaks loose. The nurse says, annoyed.." Ma'am, I'm not going to be able to hear you with your baby crying." Nice. I could hear her just fine with a toddler tantrumning at my feet and a baby screeching in my ear. So when I have locked myself in the bathroom and called back, I wait 20 minutes on hold to find out they don't have any openings until late December. Thank you! That was SO helpful!
So I read on the card he can go to urgent care for a higher co-pay. So I pack up the kids, and he leaves work and we drive over there and unload. Oh, but he has insurance. And they don't take HMO. Or something. So I call the "customer service" people and they are shocked and amazed that I want them to find somewhere to take him. Ended up, after more shenanigans, dropping him off at the ER and going home and watching Top Model. Severe sprain. Splint, crutches and so on. So there you go.

Did you check out the possible new blog location? go there. http://www.yablonski.wordpress.com

Richy is doing really well. We have to make an appointment with the neurologist for 3 weeks or so from now, and we'll be able to talk medication then. The stuff he is on is ruining his teeth, and this higher dosage keeps him a little groggy. I'll take groggy over seizures any day, but maybe there's a better option.

It's a weird place, to be praying for his healing but planning for things to stay the same. Like drugs and action plans and so on...
Here's the thing- I don't think it's God's will for R2 to stay this way. I think God wants to heal him. All the way. I just don't know how to "make" that happen. So I will pray, and wait.
In the meantime, I do enjoy him.... he is such a funny, goofy little guy.

Toby is practicing his ear-piercing screech. No, not just now. All the time. That's right, all screaming, all the time. This has to be a phase. It has to. Otherwise, it will never end. I choose phase.

Ms. Smartypants is back in business! Ask your questions, maybe get an answer! Questions of a general nature can be submitted today through Monday morning, and will be answered (or not) Monday at naptime!

Also, I said it the other day pre-crisis, new pictures on me picture blahg. Comment-vous!