Monday, December 26, 2011

What Aubrie's Angels has given me


So, in my blogging hiatus we have completed another successful year of our Aubrie’s Angels toy drive. What a blast! Our church picked up the cause locally this year, as did the church I grew up with in Mississippi. Before Christmas, 23 total families were chosen as recipients this year, as well as three separate classrooms. Then after Christmas the blessings just kept rolling in, and we’ve had even more toys purchased and more donations made to give to special needs families who need a little help this year… A donation was even made to an early intervention preschool in North Pole, Alaska, which is so fun and exciting to me!

I get a lot of back-pats and kudos for what we’ve started, and there’s something I want to say. I am ridiculously proud of what we’re doing. Ridiculously. Wow, we’ve been more successful in what we’re doing than I even expected. I always knew this project would mean a lot to me, but I never expected it to mean so much to everyone else. When we came up with the idea behind Aubrie’s Angels, it was simply meant to give back in a way that would make me feel that Aubrie mattered in the world, that her life had significance to someone other than us. It was actually a selfish motive, I suppose, but that was my intent. I am grateful for helping others, but the greatest source of my joy comes from knowing that my daughter’s life will make the world a better place, hopefully for many, many years to come.

As a special needs parent myself, I understand how bogged down one can get. I understand not being able to afford every little thing that might help. I understand the unbridled happiness a parent experiences when a child who has difficulty interacting with his environment is given a toy that changes his life. I understand the hope, and I understand the sadness. I am so incredibly thankful that we have been able to support families that walk in these same worn-out shoes. It’s been such a blessing for me to be able to help, and helping these families have joy each December has become what Christmas is about for me.

But here’s what you don’t know. Here’s what Aubrie’s Angels has given me…

I’m not sad anymore.

I’ve often looked back with regret at our pregnancy four years ago… Should I have pushed harder for the doctor to pay attention? Was there something I should have seen or noticed? Would I have been able to change the future if I had just spoken up a little louder, or pushed for one more extra doctor’s visit?

It hit me when Tyler was about eight months old when we were grieving what would have been Aubrie’s second birthday, that, had she lived, there would be no Tyler. We wanted two children, not three, and we had planned to be done after the twins were born. Following that line of thought, to wish Aubrie alive would be to wish Tyler away, and I just couldn’t wish that my baby had never existed. On that day I accepted the past.

But still I felt sadness. My poor baby girl… and all that she could have been…

But now, I am not sad anymore.

Aubrie has become a household name locally. She is no longer a forgotten child that no one thinks about, or even knows about. She is a person who existed, and she is making a difference in the world. Just recently a stranger approached me and said, “Oh, are you Aubrie’s mom?” Why, yes. Yes I am. And I am very proud of what she’s set into motion.

Because, you know what? If she’d never existed, there would be no Aubrie’s Angels. I would be perfectly content each Christmas and I would not know that life could be any sweeter. Thank God for her and her perfect little life and for the beautiful changes brought about by the flutter of her butterfly wings…

Because of her I feel no sadness, only joy.

I am not sad anymore.

And that, my friends, is what Aubrie’s Angels has given me, and that is the greatest gift of all.

Wednesday, November 16, 2011

For Prematurity Awareness Day


For All Our Babies
For all the babies who couldn’t breathe
For all the babies who couldn’t eat
For all the babies who couldn’t leave the hospital when their mothers did
For all the babies who fought for every milestone
For all the babies swaddled in blankets and wires and tubes and leads and probes
For all the babies who were never held
For all the babies who will only know a hospital home
For all the babies who will be forgotten, or never known, by others
For all the babies who were born so tiny
For all the babies who were born so early
For all the babies who have overcome
For all the babies who haven’t

You’re our heroes, and our peace, and our hearts.
And you’re perfect.

Thursday, November 3, 2011

Sweet Justice for a Sweet Baby :)

Sometimes there are terrible stories with terrible endings.

But, sometimes, just sometimes, terrible stories have a happy, happy ending.

Remember Sweet Baby?

Well, yesterday, his terrible beginning was left behind, and his new, much better beginning offically started. Sweet Baby was finally adopted.

Congratulations to Team Baby. All the sleepless nights, the hospital stays, the tears, and the worrying have led you to this day.

And now, it is my sincere pleasure to bring you Mr. Chase, official son of Josh and Tonya, and brother to Landon :)






Because, seriously, who doesn't love a happy ending?

Wednesday, November 2, 2011

A toast to beat all toasts

Yesterday I had the distinct pleasure of grabbing drinks with two people who worked in the NICU during our NICU time, both of whom have my heart for eternity. The conversation drifted to how difficult NICU life can be for mothers, like the times when we're sitting there trying to make conversation while the nipple nazis are massaging our boobs and trying to get the baby to latch. My one friend said, "Oh, it takes a special relationship to be able to do that."

"Um, you've both seen my vagina," I say, as the bartender delivers our drinks.

The conversation then turned to my deliveries, and who was where, when, and why.

"Well then," my friend says. "It's Mollie's vagina that's brought us together. Cheers to Mollie's vagina!"

And we toasted my vagina, and all her contributions to the world.

Maybe I'll add her many accomplishments to my resume.

Saturday, October 29, 2011

Why yes I am pretty much the most awesome mother ever. Thanks for noticing.

(Totally found the idea on Pinterest)

This message has been sent using the picture and Video service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.

Thursday, September 29, 2011

I actually posted videos. Please hold your applause until the end!

Just in case you'd forgotten how cute my kids are, here's a couple of video reminders...

Video numero uno is of Dax showing off just how brilliant he is, even if his grasp on the English language is just a tad bit sloppy. Oh how I love this boy and his squeaky voice.

video

And for numero dos I present you with my TyTy as he does his morning ritual to make sure his nipples are still attached. **Spoiler alert, they are.
video

Wednesday, September 28, 2011

Guess what?!?

So something very fun and scary is happening. It appears, all of a sudden-like, that I have an agent.

As in a "Oh crap I have to write a book now" agent.

You know, in my free time.

I'm hopefully going to be blogging more frequently over the next bit, and I may ask for some feedback from you all regarding your own experiences and opinions as I get further into my project. I want it to be great, and I'll need your help :)

Now I'm going to take a deep breath and procrastinate.

Tuesday, September 13, 2011

And the award for best blog follower goes to...

I have a gazillion things to catch you fine readers up on, but instead I'm just going say that one of my favorite readers called the other day and complained that I don't blog anymore, and then she bought me a cruise ticket. I heart you Lynn, and you win my reader of the year award. I wrote this post just for you! :P


Thursday, July 28, 2011

iRoadkill


I deliberated a long time for what to get Dax for his third birthday. Seriously, the boys already have everything, and the one thing I wanted to get for Dax was an expensive little computer that he would probably throw down the stairs and break… But we bit the bullet and got him the iPad 2 anyway. Ordered it the first morning it was released.

Best. Purchase. Ever.


Dax and Ty both took to it immediately. Colors, numbers, letters, videos, matching, fine motor, verbalizations, turn-taking, role playing…. What an amazing therapy resource in a tiny little package. We put on a screen protector and a protective case, and my friend Karen made an awesome bag for him to carry it in. Other than a scratch here and a scratch there, the iPad has escaped mostly unscathed… Even when thrown down the stairs or over the baby gate onto the kitchen floor.

Turns out even iPads have limits, though. Like being run over. Who knew.

The iPad was accidentally left on the roof of the car on Tuesday, and when we found it on the highway three hours later it was officially and undeniably dead. There are NO apps for that.


Ouch, my pocketbook.

Took it to The Apple Store today to see what could be done…

And they GAVE us a new one. 

As in, here you go, it's free. 

Holy crap.


Apparently they have a one-time whoopsy-daisy policy for replacing iPads that are broken by accidents… Like when they become road kill.

Thank you, Apple, for the amazing product and the outstanding customer service. You’ve just made me an Apple customer for life.

Monday, July 25, 2011

Big Brother, and Mother, are watching


I have always been anti-video monitor for my kids. Call me crazy, but I was afraid if we entered into the world of constant video surveillance we would never cross back over that line into “normalcy.” I’ve got friends with video monitors for their kids and they are constantly checking their (healthy, typical) children and, well, with Dax’s issues I was afraid it was a line I’d never be able to cross back over.

Sure, now he has a few health issues, but what about next year, and when he’s 16. Or married? There is a time to closely monitor, and there is a time to let go. I have tried to give himself and myself the liberty of letting go by only monitoring auditorily, and not visually, when it’s bedtime. It’s the same reason I don’t keep him on his pulse oximeter unless he is sick, or sleep on the floor in his room (anymore, unless he’s sick.) I want to smother him under the weight of my continuous protection, but I have to, for his sake and mine, give him some degree of normalcy.

But Saturday I bought a video monitor. It’s pretty awesome, and I can now stare at him while he’s sleeping and sleep even less than I already did because I can so easily look over and check on him… And here’s the story of why.

Tuesday in PT Dax fell, and he fell hard. My busy, rambunctious boy was *running* down a hallway *kicking* a ball, when the ball was caught under his foot and he went airborne, landing on the back of his head. We monitored for any signs of a concussion and he seemed fine. And seriously, the kid falls all the time so it’s not that big of a deal usually.

Wednesday Dax was fine all day. When I was walking with him in to OT that afternoon I noticed he was falling on the ground. A lot. But that’s not atypical for him if he’s tired or cranky or just doesn’t want to go to therapy. So no biggie.

When we got upstairs was when he really started to worry me. He was clingy and crying and he just. kept. falling. I went to grab the PT to come look at him, and we all watched together as he couldn’t walk, couldn’t sit, couldn’t stand.

And I’ll admit, I freaked out a little.

I took him to the ped right away and by the time we got out of the car at the doctor’s office he was FINE. Balance was back and he was perfectly happy. The ped checked for neurological symptoms again and, again, everything looked fine. She diagnosed a probable inner ear issue that he probably cleared himself doing Stevie Wonder head which he does all the time and that is actually the prescribed treatment for removing inner ear specks.

Phew! No biggie.

We go home and complete the bedtime stuff and go to bed, with dreams of sugar plums and therapy schedules dancing in our heads. At midnight Dax woke me up with his sleepwalking. (Side note, his sleep walking is hilarious. Since he still sleeps with O2, he’ll walk until the end of his O2 tubing and then stand there and cry. He will occasionally crawl under his bed or get stuck behind his chair, but he never sleepwalks any further than his O2 allows.) I put him back in his bed and took off his O2 in case he got back up because as cute as his short sleepwalks are, I always worry that he’ll get the tube wrapped around his neck somehow and choke… And then I went back to bed. Around 3AM I awoke again to hear him making a strange noise, so I go back to his room expecting it to be a nightmare. He wasn't in his bed. I turned on the TV for more light and found him lying face up under his brother’s bed covered in vomit and having a seizure.

And I admit, I freaked out a little.

He was hot, and he has febrile seizures, so I held him and comforted him and gave him some Motrin and within the hour he was fine, so I snuggled him in the bed with me so I could keep a close eye on his temperature and then we went to sleep. His brother had had a bit of a stomach bug with fever earlier in the week, so I had a pretty good idea of why he was ill. My only fear was he had aspirated vomit, and that dread of what could have happened if he’d had his head turned two inches to the right and he had drown. But he hadn’t, and he seemed okay, so, again, no biggie (ish.)

I got up and began preparing for the day. He was resting well with no temp, so at nine I would give him another dose of Motrin to make sure we stayed on top of the fever before it came back. I heard a strange noise from the bed and found him seizing again. This time his temperature was 97.4. Hmmm, that’s new.

I called the ped and she had us go to the ER at the children’s hospital to get a CT just to rule out a slow bleed from the fall on Tuesday. I was positive we’d be in and out but packed a change of clothes for both of us just in case of another puking episode. I transported him with no issues and he made eyes with the ER nurses and wooed them with his renditions of Queen and Elton John, his current favorite musical artists. I repeated the story of what our week had looked like about 74 times because it’s July and residents are mostly useless, and when I could tell Dax would be having another seizure soon I let them know one was coming in the next little bit. Five minutes or so later it did, but this one didn't stop. For over twenty minutes my baby lie there dusty in coloring, mostly non-responsive, and seizing. Two doses of Ativan didn’t do a thing, but finally some Keppra got it under control. While he was out they completed a lumbar puncture and the ER attending told me the CT results had come back with what appeared to be two new ischemic areas, possibly indicating a stroke.

WTH?!

So we sit and wait with no idea what on earth is going on except that my baby isn’t acting like my baby anymore. My friends were amazing; they showed up bearing hospital necessities and distracted us by helping us laugh at the downright ridiculous things that residents say and do. (A personal favorite was from an adorable medical student we actually liked. He says, after obviously not reading the chart, “How was your pregnancy?” to which I replied, “Short,” and we (as in me, Shep, and Nancy, not the cute little student) laughed. I explained he was a 23-week preemie who survived his twin sister who was born at 22 weeks, to which he asked, “Oh, really? How is his sister doing?” and I answered, “She’s not.” Again we laughed [inappropriately I suppose] as his brown face turned slightly purple. Poor guy, but, seriously. ) At any rate, he was eventually moved to a room and we waited for answers. It was finally determined that enterovirus had shown up in his spinal fluid, indicating viral meningitis. Yay! An enemy with a name, and probably the best case scenario for what we were experiencing. An MRI (with NO new ischemic areas, and no other changes from his initial MRI done at 8 months) and a normal EEG later and they were ready to send us home.

Huh?

My baby was lying there mostly nonresponsive, crying when he was awake, unable to sit up independently, running a temp, and requiring occasional oxygen support for his frequent desats. Yeah, no. We’re not going home until I’m sure he’s not going to get worse before he gets better… To which the attending replies, “What, is this not his baseline?” No, this is not his baseline. Forget the chart, forget the MRI, remember the person. NO, I repeat, this is nowhere near his baseline. “Oh, well then we’ll keep him to observe overnight and hope for some improvements.” Yes, we will.

3 AM I am awakened by the stirrings of a little boy who looks at me and actually sees me and smiles with this look of “Oh my goodness, Mama, where have you been?” and he plies me with dozens of kisses. He sees the green lights on the bed and yells “GEEN!” and dives to push the buttons. He wiggles so much his leads keep popping off and he yells “BEEP BEEP BEEP” each time they do. He sits up, and he smiles, and he sings, and he responds. Oh, thank you God, my boy is back.

He settles again, and by the time we get up and at ‘em he is able to weight bear for the first time since Thursday, and even starts attempting to walk. He stumbles and falls, but he keeps going just like he always does. The attending from the previous night sticks her head in and I hope was able to learn a lesson in not pigeon-holing children without first asking about their typical behavior. And then we went home, just us and a script for an anti-seizure med (which I argued about with the neuro attending for 15 minutes of my life I’ll never get back, but that’s a post for another day.)

I got Dax settled, went by to pick up TyTy, and straightaway went directly to Target and unapologetically bought myself a video monitor.

Hopefully one day I’ll have the courage to give it up. Hopefully one day I’ll be able to sleep soundly all night without worrying that my kid will drown in his own vomit, or gag on drainage he just can't clear, or choke on his O2 tubing, or any of the other random assortments of medical stunts he tries to pull… But until then… Be aware, little boys… Mama has eyes in the back of her head, and she can see through walls, too.

Sunday, July 24, 2011

Sweet Baby's day in court! *UPDATE*

Hi friends! I have a blog post a'brewing, but before my life got in the way I wanted to post a special request for prayers and happy thoughts. Remember Sweet Baby?

After much, much ado, the termination of parental rights hearing starts TOMORROW!

What a very big, very important day for a very special, very adorable little boy.

I'll update you all as soon as it's official!



***UPDATE***

It's official!!!!! Sweet Baby is now an orphan :) They still have to wait on any appeals, but the deal's almost done. Team Baby will soon be getting their "Bill of Sale" (channeling Pete's Dragon) that he's all theirs :) The "biohazards" didn't even bother showing up for court. Finally they did something good for that sweet baby boy!

Sunday, June 19, 2011

Not a Father's Day post, but Happy Father's Day anyway

So, a friend called me on Friday trying to gain some insight into what to do to help her nephew and his wife upon hearing they'd just found out their yet-to-be-born baby had passed away. She asked me about Aubrie and cremation and such, and I ended up taking some pictures of Aubrie's urn to send to her.

Aubrie's urn has always been in Dax's room. Knowing they're still "together" gives me peace, and I've always felt that she would want to be with her brother(s), too. (I will interject here that she's on a very, very, very high shelf, as any of you who know the boys and their fascination with throwing things down the stairs would understand. And, as a sister, I know with 100% certainty brothers especially like to throw sisters down stairs!)

At any rate, all that being said, I took her urn outside for pics so the engraving would show up better, and when I brought her back in I put her down in the kitchen. She's always stuck on the shelf in the boys' room, and, as irrational as I know it is, I thought maybe she'd enjoy a little more action... So I talked to her for a minute and I left her in the kitchen.

Fast forward a few hours, and Shep is fixing some food and turns to me with this strange look on his face.

"Umm, why is Aubrie in the kitchen?"

"I got her out for a photo shoot and I thought she might have been bored, so I left her down here so she could have a little more excitement."

"Oh, okay. That makes sense."

And it did.

Right?

Sunday, June 5, 2011

Hold on to your breetches, it's an update!

Hola, remember me? The world’s worst blogger? I’m back, if only for a moment. Time for an update!

The update is… that nothing much has changed.  The boys have been healthy for the most part, and they’re both growing well. Dax has just taken off developmentally lately and he’s progressing in every single area I can think of. Expressive language remains his biggest hurdle right now, with him having poor word finding, poor articulation, poor oral motor coordination, poor breath coordination… You name it, it sucks. He still loves signing and he’s really good at recalling signs, but again, finding a word he wants to use spontaneously is hard for him. Receptively he knows so much, and he loves, loves, loves showing off all his knowledge. He’s a sponge and a people pleaser, and that makes therapy and school so completely fun and beneficial for him.

Dax turned three in April, thereby ending our time with early intervention and beginning our time under the school system. The change has been both good and not so good, as the IEP process has left me completely and utterly underwhelmed, but the teacher and speech therapist we see with regularity are both so very good with Dax and are flexible to his needs. As for the IEP part… I won’t go into all the details but he’s already had THREE IEP meetings since his first on March 28, and I plan on another in August or September. Dax will be homebound this year but can hopefully start attending school with his peers in the fall of 2012.

We’re also very excited that a local early interventionist and her husband, a Tae Kwon Do instructor, have teamed up and started a special needs Tae Kwon Do class. Dax has been going each week for about a month and he’s done exceptionally well with it despite his motor challenges. He loves going to class and loves practicing the moves, even if he doesn’t do them just quite right. I think it is going to be a great, great thing for him!

As for upcoming appointments, we see the pulmo next week and I don’t foresee any changes. Endocrinology is soon after, and I don’t see them doing anything either. The cardiologist will be seeing him in September and the plan is to stop his Viagra upon that echo pending no changes for the worse, and then do a follow-up cardiac cath a couple of weeks later to see if he can maintain with no pulmonary hypertension. He’s still on O2 at night since he drops his sats into the 80s without it, so that will be our only treatment for the pulmonary hypertension if he “passes” his heart exam. His ASD is still getting smaller with time, so we will continue to keep an eye on it but it is not a major issue at this time.

The question I have for any of you folks with kiddos with paralyzed vocal cords… Have the docs tried the injections with your child? The spacer? Anything else? That is the next issue I want to tackle this year or next, medically, as Dax wants to talk and wants to drink and he needs all the help he can get. Any input? Advice? Our ENT has called Dax a “hornet’s nest” and he “doesn’t like to kick hornet’s nests” when he doesn’t have to. He doesn’t have to live with said hornet’s nest or have to worry about his development like I do. So, thoughts? What’s worked? What hasn’t?

As for my sweet, sweet TyTy, he will be two in July and he is STILL. NOT. TALKING. Nothing, nada, zilch, zip. Every now and then he’ll say something that we think might be a word, but then he never, ever says it again and we start thinking we hallucinated the whole thing. Couple his vow of silence with his love of eating mulch, topsoil, dirt, rocks, and any other earthy material he can find lying around, and I’ve begun to really get worried. I took him back to the ped last week to have some bloodwork done and she wanted to do a developmental exam of sorts… And after all was said and done she thinks Ty is completely normal and healthy and extremely bright and curious and quirky, and he will grow out of this silliness over time. She also noted he is very hard-headed (and we have absolutely no idea where he gets that from.) She is sending him in for a hearing test just to be sure, but really just thinks he’s one of these kids who is just busy, and it doesn’t help that his role model is a three year old who doesn’t talk much. As for the love for all things unedible? He doesn’t have pica with any other items, and doesn’t mouth objects, he just likes to eat dirt and rocks. His levels looked good, so we’ll just keep him on vitamins and try to reinforce not eating non-edibles, and she thinks he’ll grow out of it soon. I hope so! He’s gaining weight so fast and I’m not sure if it’s fat and muscle or just rocks in his tummy.

Ty’s still getting early intervention services and he’s supposed to start speech therapy this month. Hopefully he’ll soon decide that he can talk, and hopefully when he does decide to talk it will be all nice things that I want him repeating, and not the terrible things he hears on a daily basis such as “If you don’t get your hands off of your wiener I’m going to chop it off and feed it to the dogs.” Not that I would ever say anything like that. Ever.

Ever.

Friday, May 20, 2011

Prayers needed for a micro-preemie friend!

Hi all, I have an urgent prayer request for one of our favorite micro-preemies. Braden is a three year old former 24-weeker, and he, like Dax, survives his twin sister. Braden has beaten so many odds, and he has just blossomed since having his trach removed a few months ago. He even started tae kwan do classes last week! But now, Braden is lying sedated in the PICU at Vandy Children's, intubated, and fighting pneumonia and a cardiac issue that the doctors haven't gotten figured out yet. There are so many questions and so few answers right now and the family covets your prayers of healing for his lungs and heart as well as prayers for their strength and wisdom for the medical professionals.



Vandy has a free, quick and easy e-card service that allows you to personalize. Card and send it to Braden's room. If any of you have ever been there you know how important words of encouragement and faith are appreciated... You can use this link to send Braden a card... He is in room 5423.

http://childrenshospital.vanderbilt.org/interior.php?mid=1985



You can also follow their updates and offer support on the family's blog, http://braden-kaleigh.blogspot.com/.


Thank you all so much for the prayers! This is a NICU parent's worst fear, and they're living it right now.

Monday, April 4, 2011

Happy Birthday to Daximus Maximus!

Oh sweet boy, how fast three years has gone by. What an enormous blessing in a teeny, tiny package!


Wednesday, March 23, 2011

Happy 3rd birthday to our angel!

How can it be possible that three years ago today we gave birth to our princess? And how can it be possible to love that little girl so much?

Happy Birthday to our Aubrie Angelina. I hope heaven had one amazing party for you today!

Friday, March 4, 2011

'Twas the Night After Discharge

I was going through some old files today and found this and I had to share. I wrote this in December of 2008 right after Dax came home and completely forgot about it. Tonight I have laughed and remembered!


THE NIGHT AFTER DISCHARGE

'Twas the night after discharge, and all through the house
Not a creature was sleeping, except for my spouse;
The supplies were scattered all over the floor,
And we had already made five trips to the store.

Our preemie is tucked warm and snug in his bed,
With cereal and bananas still caked to his head.
He had Viagra at 2 and Lasix at 4,
So I attempt to take a shower before he’ll need more.

When from my son’s room there arose such a blaring,
I ran from the bathroom, completely naked and swearing.
His O2 sat monitor is alarming like mad,
But I find he’s just sweat through the only Posey he had.

I finally secure his foot in a fancy new way
With some great tape we lifted from the hospital that day.
I see it’s now time for his next round of meds,
And he’s due for his suctioning to clear out his head.

And let's not forget that upcoming fight
We have to have over the Pulmicort each night.
A quick change of the clothes from the Great Flood of Lasix
And some new sheets, too, since he’d covered his basics.

We return the all the phone calls from worried well-wishers
Wanting to check on our guy... And see homecoming pictures!
“Hi Dad!” “Hi Preacher!” “Hi Friend!” “Hi Mother!”
“Hi Grandma!” “Hi Uncle!” “Hi Aunt!” “Hi Brother!”
“We’re all doing great, and Baby is sleeping.
Oh wait, I must go! The apnea monitor is beeping!”

I fix his tiny cannula for the 900th time
With 17 pieces of tape from his blue nose to his spine.
I hook him up to his overnight continuous feed
And go sit for a moment for some rest that I need.

I check him once more before I lie down in bed
And find him covered in formula from his feet to his head.
Instead of him resting while his calories are fed
His food pours out through the $&%# open med port, instead.

So I clean him and his sheets and retape him once more
And snuggle again with this puny boy I adore.
I check all the equipment and I say one more prayer,
And I sneak a quick sniff of his formula-flavored hair.

I say to myself as I walk out of sight,
“Thank God he is home, but I need Xanax tonight!”

By: Daxton's mom

Monday, February 28, 2011

Adventures in potty training... Take 11

In a moment of hopeless optimism, today I purchased some big boy potty seats to fit on the big people potties. You got it folks, we're going to try potty training again. You may remember our last attempt was not super successful, and honestly we haven't even really tried since then. But that changes... tomorrow.

As for tonight... Tonight I put the big boy potty seat on the big people potty and decided to give it a whirl.

I called Ty over and pulled his pants down, and stuck my hand in poop leaking out of his diaper. I wash my hand, clean his butt, deal with the poopy diaper, and help him on the potty. We sing the potty song for a few minutes and then I let him down. He peed on my foot almost immediately. I threw him placed him back on the potty and he finished pee-peeing in the big boy potty! Woo hoo! Success! And then I sent him running on his merry little naked way.

After that, I was feeling cocky, so I stripped down big brother and put him on the big boy potty and commenced with the potty song singing once again. I was unable to finish the song as he and I had an ongoing argument regarding whether his boy bits should point down into the potty or lie on the seat. (This is a problem only for my child on Viagra.) Eventually I got tired of playing whack-a-mole and sent him on his merry little naked way, too.

So, there's still some work to do. But maybe March will be our lucky month.

Friday, February 18, 2011

Sometimes God is an Indian giver

In 1993, not long after my 13th birthday, my 15-year-old cousin died of a self-inflicted gunshot. His mother found his body. I remember riding my bike to the church and crying on the steps, knowing that God heard me and that Justin would live. Six months later, my 80-year-old grandfather died of cancer. I remember, even at 13, I recognized that death is always sad, but it is not always tragic.

Justin’s mother never recovered. She developed cancer and died several years later on Christmas Day. I remember thinking how happy she must have been when she touched his face again.

Through the years the majority of funerals I’ve attended have been for 70 years+ great aunts and uncles or grandparents. They’re sad, and we miss them, but nothing ever had the gut-wrenching heartbreak there was when we lost Justin. It wasn’t just the loss of a person we had known, it was the loss of what he could have been and what he should have been.

In early 2008, we buried my Granny. She’d lost her mind and body to Alzheimer’s and no longer knew happiness or the ones she’d loved.  She had buried two husbands, two children, all her siblings, and a host of assorted friends and family, and she was ready to go. A few short months later we gave birth to Aubrie (named after my grandfather who passed in 1994) and subsequently laid her to rest.

I never knew Aubrie other than her flutters in my tummy and her acrobatics on the ultrasounds. I never held her in my arms while she was alive. I never watched her sleep. I never got to wipe her tears, or even see her fused eyes open. But she was ours. And she was our future. She was a one-pound ball of potential and hopes and dreams and unconditional love and acceptance. And then she was gone.

There’s this club you’re initiated into when you have a child die, whether she’s not even born yet or 60-years-old. We share a common respect for life and wage the internal battles you can only fathom if God gives you the most precious gift and, then, takes it back. Some parents get to watch their children die slowly of diseases they can’t beat, all the while begging God to spare their child… anything, God, if you’ll just spare my child… Then there’s the children who are just gone in an instant, and the parents are left to forever remember that their last words to their child were said in anger or frustration, or that they didn’t make it to his last ballgame, or that they didn’t realize to cherish every single moment because they didn’t really know it could be the last.

Since joining “the club” three years ago, the only funerals I have been to have been for children. We’ve met too many families who’ve watched their children be stronger than any child should have to be as they fight some illness they didn't ask for, only to bury them days or months later. And then there was a cousin we lost in a one-car accident in September, full of life, just a month shy of his 18th birthday... and it never gets any easier. Once you’ve felt the pain of losing your own child, each child you hear of who dies is another twist of a knife buried in your soul, another kick in that empty place in your heart. Once you’ve lost a child, you truly understand every child is precious. Every child is a ball of potential and hopes and dreams and unconditional love and acceptance. You can no longer hear a story about a child with cancer and simply think, “Oh thank you God for protecting my child,” because you have some understanding, no matter how far removed, of that child’s mother’s pain. You can no longer hear of the suicide of a teen boy and simply think “Thank God that’s not my child,” because, in a small way, it is your child. Another twist, another kick.

Early this morning I received a text I was not expecting, and it is with great sadness I report to you all that Baby Bella has passed away today on her nine-month birthday. Her mother was there and held her as she passed. Bella fought and overcame and surpassed and amazed… and now she is gone. I don’t understand why. I don’t understand at all.

The one lesson I have finally internalized after three years of watching parents bury children is thank God we had them. Thank God for the one day, for the one month, for the nine months, for the one year, for the 18 years, or for the 48 years. Thank God for giving us the most precious, amazing children… Children who taught us more lessons in their short lives than we ever knew we needed to learn… Children who were able to change lives just by existing. How empty and sad our lives would be if they had simply never existed.  We would have avoided the pain but would have never had the joy… and that would have been a much worse fate.

But it doesn’t stop the pain or the longing, and it doesn’t fix that wound deep inside you that never, ever heals.

Please keep Bella’s family in your prayers as they begin to navigate the ins and outs of this club no one ever wishes to join… and never, ever take your own precious gifts for granted.

Wednesday, February 16, 2011

Oh my, it's a blog post!

Yes, I know. I'm a bad blogger, a bad mother, a bad American. I have been pulled so many different directions lately playing catch-up, putting out fires, and wiping butts, that I have neglected that which is really important in life... Blogging. And I miss it, I really do. I miss sitting at my computer and enjoying it and not just working on paperwork until my eyes bleed. I miss sharing my boys and their idiosyncrasies and my fabulous, fool-proof, easy-peasy parenting tips that make other parents' strategies pale in comparison (ha!) I miss reading the blogs of others and catching up on how their amazing little kiddos are doing. I miss... Sitting. And thinking. And finishing.... anything. Oh well, those days will come again I suppose.

My last update was in December I think, so even though it seems like Dax should have his license and Ty should have facial hair, we actually haven't had that many changes. Dax had his adenoids out at the end of December and that was followed two days later with a super-fun adventure at my mom's in Po-dunk, MS, that involved a little blue boy and some very nice, understanding paramedics. He had a few apnea spells for about a week after that, and then everything leveled back out again. The good thing about having his adenoids out? Other than that first week after, we haven't had any airway issues. The bad thing(s) about having his adenoids out? A.) Adenoid breath smells worse than bulldog farts, and B.) when they stop snoring, you can't hear them breathing at night and that makes for one super-jumpy, sleep-deprived mama.

Other than that, Daximus is just plugging along. He had an assessment with the school system on Monday. They were appropriately enamored with him, and he seemed to do okay (but not great) on the tests. He did, however, show them how outrageously long his attention span is, and that he knows his letter sounds, and how smart he is by demonstrating tricks such as, when presented with a red block and asked "what color?" ("red" is very hard for him to say,) he put down the red block, picked up a green one ("green" is much easier for him to say,) and said "geen."

(McGuyver pulled a similar trick with his early interventionist a few weeks ago... She had 10 letters out and asked him to give her "W." He did. A few tries later she asked for the "M." He picked up the W, turned it upside down, placed it back in its spot, then picked it up and gave it to her. You can't argue with that. ;P)

I absolutely, positively cannot believe he will be three in a little over a month. Not possible.

So my not-so-little boy Tyler runs everywhere he goes and gives the best kisses and hugs in the world, and loves Elmo, cookies, cars, and his wiener. Aaaaaaand, he's not talking yet. Not even a little. We had him evaluated last week for early intervention and, ding ding ding, he has enough of a language delay that they're concerned. I waffle back and forth on whether I'm worried or not. On one hand, he's not even two yet and he's so far ahead physically... He's already walking down the stairs holding the rail and running everywhere he goes and his balance may possibly be better than mine. He has no signs of sensory issues other than a strange fascination with firmly pushing items against his chin (so weird) and using his fingers to feverishly blend all his food items into smithereens before he eats it, and those are more quirky than interfering. On the other hand, he's supposed to be my "normal" kid, and dammit, I just want him to start acting like it. I mean, he's got totally normal people to learn from, right? Right?!? Anybody?

Ugh.

And that's really all that we've had going on. Other than, you know, everything else.

So this brings me to an idea I had yesterday, and if I can figure out how to do it tonight I will. If not, then maybe sometime soon. Or not. But it hit me Monday when the assessor reminded me again of how "scattered" Dax's skills are... And then again when our early intervention coordinator told me how "scattered" Ty's skills are. And then again when I remember how my mom always said how "scattered" I was... And again when I realize just how "scattered" my life is now...

I mean, really, I always heard it was a balancing act... But it's not. There is no "balance" during this stretch... It's a scattering of as much as you can toss in as many directions as you can toss it, and a sincere hope that enough gets into all the corners of your life that need it. A hope you scatter enough water to put out the fires, and enough attention to nourish the areas that need love and growth.

I'm scattered.

And that, my friends, will be my new blog name. What do you think?