Monday, January 31, 2011

Parenting 101: Trouble is Brewing

This is the first in a series of posts I'm writing this week about the ever-elusive art of child-rearing. ((Do I need to stop here and point out that I am in no way, shape or form an expert on this subject? I would hope for my existing readers, that's pretty much a certainty understood by us all.)) I hope you come along for the ride and maybe learn a thing or two from our mistakes experiences!



I don't know about you, but my first-born child did not come with a "How To" manual, regardless of how much I wish it were so. We did the best we could as first-time parents, but ultimately, we took all of the authority in our family, wrapped it in a tiny little pink box with a pretty little bow and presented it right away to that beautiful, brown-eyed baby girl on the day she was born. Not knowingly, of course. I mean, really, who would turn over all power and control to a helpless, hours-old infant, regardless of how wonderfully she smelled or how sweet her little noises?

Not surprisingly, hubs and I have been challenged lately by our sweet LO's behavior. Granted, she's now 3 1/2 years old. Behavioral problems are bound to happen at this age. But it started to seem like things were getting out of control. The line of authority in our home continued to blur and it seemed Little Miss Thing truly was the one wearing the pants in the family, calling all the shots.

It started out innocent enough...
  • LO: I don't want water with dinner, I want milk!
    Us: Okay. No big deal. Here's some milk.
  • LO: I don't want to eat that for lunch!
    Us: Okay. No big deal. Here's a PB&J instead.
  • LO (swiping a toy from Chase): But I was playing with that first!
    Us: Okay. Here, Chase. How 'bout you play with this instead?

Now, of course there were some things she'd put up a fight about that we wouldn't give in on...

  • LO: I don't wanna go to bed!
    Us: It's 9pm. Go to bed, kid.
  • LO: I don't wanna wear my coat!
    Us: It's 12 degrees outside, kid. Put it on.
  • LO: I don't need to go potty!
    Us: Sit on the pot, kid, until something comes out.

When it came to her (and her brother's) health and safety, you can bet your britches (never said that in real life before... is that a southern saying? Weird.) we would lay down the law and do whatever was necessary to get her to comply.

But as for the day-to-day stuff? It started wearing on hubs and I. Big time.

The morning routine on school days was a nightmare. She wouldn't want to get out of bed. She didn't want to brush her teeth. She didn't want to wear "that" shirt because it was itchy. She would make all kinds of loud noise in the bathroom, which was right next to Chase's room (where he was still asleep).

Dinnertime was worse. Without even so much as knowing what was on her plate, she'd formally announce that she didn't like it and wasn't going to eat it. This is where hubs and I, the submissive, not-even-slightly-in-charge parents, would begin jumping through every hoop she'd toss our way to get her to eat her dinner. Some nights I'd just throw down a PB&J in front of her to avoid the fighting altogether. Other nights, I'd expect her to eat what I made for the rest of us. Hubs and I would try to make a game out of it, or threaten her with the loss of one of her favorite toys or games, or that she wouldn't get any dessert, etc. Then we might resort to some skill-building exercises like pleading with her to "just eat 4 bites of corn, 2 bites of chicken, etc..." We never got anywhere with her and dinnertime was complete and total chaos, night after night.

Whoa.

Now I know some of you are thinking. This just sounds like typical 3- or 4-year-old behavior... You just have to deal with it... She'll grow out of it eventually... Every parent has been through it... blah, blah, blah.

I don't agree with any of that. I believe she is knowingly and purposefully manipulating mommy and daddy to get her way because... get this... it's all she's ever known. Think about it. At what point do you stop catering to your newborn baby's every whim? At what point do you begin to teach responsibility? Discipline? Respect? Character?

We obviously hadn't hit that point over the past three and a half years. But we're there now.

The only question left is...

What do we do about it now?


Stay tuned tomorrow for the next post in this series!

Friday, January 28, 2011

New Series

Hey, guys! I just wanted to let you know that I'm working on a little series of posts for next week about an exciting topic that is very near and dear to me. In fact, if you have any children, specifically of the preschooler variety, I believe you'll find this series to be interesting and thought-provoking. If you don't have any children, or they haven't yet turned into a superfreak of nature (a.k.a. preschooler), then you'll probably find the series humorous... mostly because I'm the one dealing with it, not you!

Have a great weekend!

And stay tuned!

Thursday, January 27, 2011

Sigh. . .

I guess I owe you all a post about the future of this little blog of mine. I promise there's nothing overly profound in what you're about to read. Just straight-forward, honest and to the point.

You might recall the poll I posted last week as part of my post about the blog's future, asking you readers what I should do next. Nine of you said keep things the way they are, and four of you thought I should create a separate blog for Chase but still maintain this one. The other 82-ish of you who read the post didn't take the opportunity to share your opinion by choosing a little radio button and submitting your vote. I am extremely grateful to the 12 of you who commented on that post, encouraging me to follow my heart and do whatever makes me happy. After all, this is my blog and I should feel free to share whatever I want to without worrying about the repercussions of others being upset or offended by what I write.

So, without any further ado, I shall hereby proclaim my intentions regarding the future of this blog...


(((drum roll please)))


...


...


...


Uh, I'm just gonna keep it the same.

((utter silence & disbelief))

Shocking revelation, right? I told you so. It seems to me I just like my blog and I like writing about whatever strikes my fancy, and at the end of the day, you guys have the choice to read it or not read it! So simple, right?

I like to cook and bake. So yes, there will be recipes shared here.

I like to shop. So yes, there will be new finds and (non-paid) product endorsements here.

Most importantly, I love my family. So yes, there will be lots of pics and videos of the kids, updates on my sweet boy's precious heart, lots of LO's antics, and any other happenings in my family's life that I feel like sharing.

After all, it's my blog. I can do whatever I want, even if that means doing nothing different or new at all!

Obviously I did makeover the look and feel of the blog, and I hope you like it! I absolutely love it and had so much fun learning some new tricks of the web design/development world since I've been out of touch with it for so long.

So I guess that's that. I hope you'll stay tuned and keep up with our little piece of the world. But it's cool if you have other stuff to do instead. I'm not all about trying to please everybody all the time anymore!

:)

Wednesday, January 26, 2011

Happy 15 Months!

So that little chunk of pure sweetness right there? See him?


Ya. He's 15 months old today! Yay!

Happy 15 Month Birthday to my sweet boy!

Oh, and for the record... don't think I haven't been reading those comments some of you left me about how he's not a baby anymore, he's growing up into such a cute little toddler, etc... you know who you are.

Say what you will, but he's my baby.

My precious little baby.

And he always will be!



And yes, I'm a loser mom because in the excitement of sharing my new blog look yesterday, I neglected to post birthday wishes to my dear LO.

Happy 3-1/2 Birthday to my precious girl!


I'd be lying if I said she wasn't a handful 24/7, but somehow she manages to warm my heart and make me smile on a daily basis. I just love this girl!!!

Tuesday, January 25, 2011

A New Look!

After seemingly endless hours of anticipation, I'm finally able to share the big reveal... of my new blog design!

Ain't she purdy?

I hope it was worth the wait! I've been working on a new design for several days now and am really excited about what I've come up with! A special shout-out to my SIL for her inspiration along the way.

I was hoping to unveil the new look Monday morning, but here's what happened. The family headed up to Asheville, NC for the weekend so I could play the piano for a weekend retreat for our SC district Church of the Nazarene pastors and spouses (an honor and oh so much fun!). While hubs was unloading the mass of stuff from our vehicle in 24 degree weather, there was an unfortunate mishap:

My beloved MacBook met the pavement.

It was an accident, obviously. And hubs? He. Felt. Awful.

Turns out the hinge where the lid opens and closes ended up with two small cracks. Luckily all of the data was still good and there were no other issues.

So this morning I took my dear, sweet MacBook to our local Apple-certified repair store--no, not The Apple Store--and ((shudder)) had to leave her there all day. Not overnight (thank goodness!), but all day.

Now she's back and so pretty! I ended up with a new hinge thingy as well as a brand new keyboard and trackpad (there was a manufacturer defect that had caused some peeling on the edge of my MacBook near the trackpad, so the whole durn thing was replaced at no charge!). We were very blessed that the repairs to the cracks that were caused from the MacBook vs. Parking Lot incident were under $100. That was so unexpected! Our Googling told us we'd be looking at close to $200 for parts, then about $90/hour for labor, with typically 2 hours for the repair (that's just under $400 for you non-math-wiz's like me).

What a blessing!

So anywho, I'm excited about the new design and I hope you like it, too. It looks mighty fine in Firefox and even Safari, but I'm afraid it loses a little something when viewed in IE for all my PC-user friends (really, you should get a Mac).

I'm also looking forward to sharing my thoughts on the future of Just Another Day... later this week. Stay tuned!

First Steps... sort of

For the record, I'm still totally excited to share something with you guys, but due to circumstances beyond my control, I have to delay it by a day or two. So sorry to pique your interest and leave you hanging! I promise it wasn't intentional...

In the meantime, I thought I'd attempt to tide you over with a clip of my boy taking some steps! They aren't technically his "first" steps (he's been taking several independent steps in a row for days now), but this is the first time I'm sharing them with you so technically they are the first steps you've seen. :)

Here he is in his 5 seconds of glory! Enjoy!




Posted from my iPhone

Sunday, January 23, 2011

Ooooh!

Oooooh! I've got something exciting in the works...

Looking forward to sharing it with you guys soon!!!

Woot! Woot!

Friday, January 21, 2011

A Haiku

Why do I worry?
Why am I in constant fear?
He knows what's ahead.

Uncertain future,
Afraid of the pain of loss.
Leave it in His hands.

Enjoy each moment.
This is a blessed life we live!
Praise His holy name!

Thursday, January 20, 2011

Woot! Woot!

So here's an exciting announcement that I know all of Blogland has been dying to hear... Get ready! Your life will finally be complete once you hear this proclamation...

Hubs and I beat Super Mario Bros. Wii!!!



Yay! We've been playing in the evenings after the kiddos are in bed, and it has been, well, interesting to say the least! While we both have plenty of experience with the ol' Super Mario Bros. trilogy on the original Nintendo, we both seem to have different "styles" of play. Hubs is the cautious one. He wants to explore every pixel of the screen and investigate each nook and cranny of every world to find every single hidden treasure. He takes his time. He's cautious.

I, on the other hand, am the fly-by-the-seat-of-my-overalls, run as fast as possible, kill everything in sight and get to the flag as soon as I can kind of player. I throw hubs' caution to the wind. I get 'er done!

((Side note: I just came to the strange realization that hubs and I both seem to approach life in a similar manner in which we approach Super Mario Bros. Weird, right?))

Imagine playing in a two-player scenario with two people who couldn't be more different in their approach. Imagine all the fun! Haha! It was a blast, and I was SO impressed with hubs since HE was the one who finally, officially, after both of us tried and failed miserably many, many, many, maaaaaaannnny times, was able to defeat Bowser at the end of World 8. Woot!

We were stoked to find out there's a hidden World - World 9 - that you can gain access to by going back and retrieving ALL of the Star Coins in each World. Phew! I think it's going to take us longer to collect all of the Star Coins than it did to beat the whole game in the first place! Sheesh!

But I don't care. It's fun! And believe it or not, it's been quite a learning experience! I never knew hubs was "that guy" that literally, physically leans his entire body (along with the remote) to the right when trying to make a big jump during the game. Hysterical.

Wednesday, January 19, 2011

Family Fun

Since hubs was off work Monday and LO didn't have school, we decided to take the kids out for a little fun! We went straight to our local Chuck E. Cheese, mostly because LO loves that joint and hubs and I can manage to put up with it for an hour or two (as long as it's not "too" busy). We pulled into the parking lot and it was minivan central! Haha! Apparently since there was a day off from school, the entire county decided Chuck E. Cheese was the only place to go!

Whatevs.

We headed in and the fun began! It was so wonderful to see both of my kids playing and having fun. It's so easy to take things like trips to Chuck E. Cheese in the middle of cold/flu/RSV season for granted, but we cherish outings like that and are so grateful our boy is healthy enough to do things like that! He is SUCH a blessing and I cannot thank the Lord enough for His provision over Chase. I don't like the uncertainty looming over our heads right now (early spring cath possibly followed by an early summer Fontan!?), but I know God knows what He's doing, and it's our responsibility to trust Him and put our faith in Him.

Sorry for my little soap box speech... didn't mean to get off topic. Just reminding myself really of how blessed we are and how amazing our son truly is!

Without further ado, let's see some pics!

She's so excited! Ready to play!
Seriously. The girl is excited.
Riding with her pal, Chuck.
She LOOOOOOOVES riding this horse! We could hardly get her to take turns with the other kids!
This boy. He's my love! It felt SOOOOOOO good to see him doing "normal" things like LO did at his age. Such joy!
He had a blast! It was SOOOOOOOOOO wonderful to see! Such a big boy!
Weeeeeeeeeeeeee!
Big sister liked the slide, too!
A little too much fun for this boy! He was O.U.T. before we left the parking lot! LOL!

Tuesday, January 18, 2011

Blackmail Day

Because I'm such an obnoxious great mom, and because Chase just happened to find LO's box of dress up clothes, I decided to take advantage of the opportunity and take some blackmail photos of Chase. Yep, folks, that's just the kind of mom I am!

Um, I'm not too sure about this, Mommy...

Oh, okay. Ya, I'm cute, I know. It doesn't matter what I'm wearing, does it?! SMILE!

But maybe we can lose this thingy on my head, Mommy? It itches!
I don't like it! I don't like it!! Get it off! Get it off!!! Daddy, help!!!

Bwahaha! Good times!

LO wanted to get in on the photo shoot, so of course I got some great pics of her, too! I'm pretty sure these can be used for blackmail as well...

She designed the outfit herself. I know -- surprising, right?

I asked her to pose for the camera, and this is what I got! LOL!

Another awesome pose. I think she's channeling the Statue of Liberty.

Monday, January 17, 2011

The Future of 'Just Another Day...'

Lately I've been contemplating the future of my blog. I love blogging. I want to do it more often, but for some reason I stop myself from writing about things that I once would have written about without a second thought. These days, I'm torn about sharing our general life (for those of you bored enough to read it), sharing specifically about Chase and his special heart (for all of the heart community who follows us) and sharing my feelings/opinions on things, some of which may certainly upset some of those in my "real life." Then you've got the random things I like to share, such as recipes, shopping finds, and of course pictures and videos of the kids (mostly for our family, all of whom live far away). I don't want to bore some of you readers who are not interested in hearing about the latest advancements in treatments for congenital heart defects. I don't want to lose readers by just posting the latest pics/videos of my kids and their antics. I don't want to upset those in my inner-circle by venting about some of the things I'm currently struggling with.

I'm not a shopping blog. I'm not a cooking blog. I'm not a CHD blog.

I don't know what I am.

I do know that I just want to be free to be honest about my life. I want to share my struggles and seek support from my readers. I want to be funny and entertaining and draw people back to my blog. I want to interact with my readers more and get to know who is out there following these posts.

I don't want to be judged. I don't want to be alienated. I don't want my blog to serve as a replacement for a relationship with me for my family and friends.

So what's next? What do I do now?

I don't know.

I've thought about making my blog private so I can choose who I allow to access it. That way I'll know who my audience is (and isn't) and can write my posts accordingly without worrying who I may possibly upset.

I've thought about starting another blog that focuses only on Chase and his journey with HLHS. This way all of my heart friends can get the latest info on Chase's heart without having to sort through, say, my latest Amazon purchases. I don't mind the upkeep of two blogs, but I know this would result in some people having to check TWO blogs for all of the latest updates on us.  :)

I've thought about keeping this blog mostly generic but include info on Chase's heart journey, then starting another anonymous blog (not linked from here) where I can have an outlet to share the thoughts and feelings I can't talk about here. That would result in essentially me talking to myself for the most part, since I wouldn't have any readers initially and no one would know it was me writing it.

There are so many options to consider and I don't yet know how I'm going to move forward. Ultimately I feel I need to make a change of some kind, whether it be big or small.

What do YOU think?

I'd really like to know.

Friday, January 14, 2011

The Gift that Gives Back

As I mentioned yesterday, I'm super excited about the gift I purchased for my mom's birthday. Since I was able to give it to her at her birthday dinner last night, I can finally share it with all of you!

So to be honest, when I first saw this item, I knew I needed one for myself. I ordered one right away and am completely in love with it. Not only is it beautifully stunning, but it means oh-so-very much to me on a personal/emotional level. Now that I'm sure you're wondering what it is, let me show you:


This beautiful heart pendant was inspired by the all-too-short life of sweet little Mia Marrone:
Mia Grace Marrone was diagnosed in utero with Hypoplastic Left Heart Syndrome. Mia was born on April 29, 2010.

At 6 days old, Mia underwent her first of three open-heart surgery, the Norwood at the renowned Children's Hospital of Philadelphia.

On July 25, 2010, at 87 days old, Mia's battle with HLHS sadly came to an end.

Mia Grace Marrone is survived by her parents, Jennifer & Ray Marrone, her older brother Cole and her twin brother Madden.
The Mia Marrone Heart Foundation is raising money and awareness for congenital heart defects, specifically HLHS, by making this beautiful Mia Marrone HLHS Swarovski heart pendant available for purchase. ALL of the money used to purchase these beautiful charms goes directly to fund research and raise awareness for HLHS.

If you have a special heart child in your life -- son, daughter, grandson, granddaughter, niece, nephew, cousin, etc. -- this gorgeous pendant can serve as a beautiful tribute to your precious heart warrior. I know for me this purchase was completely for sentimental reasons: I feel honored to wear my son's special heart around my neck and love the opportunity to talk about what he's been through when others notice my lovely and unusual pendant. Please visit the Mia Marrone Heart Foundation Facebook page for an order form if you're interested in purchasing one of these pendants. UPDATE: They are now available in both pink AND blue pendants! Gorgeous!

I do believe my mom enjoyed her new pendant in honor of her grandson, and I know I cherish mine. And I will tell you that photos just don't do this beautiful heart justice. Here's another photo with the flash... those Swarovski crystals sure do sparkle!


Thank you to Jennifer Marrone and the Mia Marrone Heart Foundation for making these beautiful pendants available and for all you're doing to raise awareness and support CHD research!

Thursday, January 13, 2011

To Do's

Hubs and I are having my mom and grandparents over for dinner tonight to celebrate my mom's birthday (yay!), so I've had a busy day or two! Last night, I put together a list of all that I needed to do. There was the food: PW's lasagna, salad, garlic-cheese sweet bread, the cake: chocolate with chocolate mousse filling with vanilla buttercream frosting and a chopped Hershey's bar coating, and of course the laundry and cleaning: bathroom, kitchen, sweep floors, dust, pick up toys, etc. There was the card to fill out and the gift to wrap (I'm oh-so-excited about the gift... will share more soon!). And let's not forget how I totally forgot Chase had his PT appointment here this morning (it wasn't until his awesome PT and OT knocked on my door and I looked through the peep-hole thingy that I remembered... and I was up to my elbows in buttercream!). Then of course came a quick run to the grocery store with the kiddos before lunch.

Whew!

I say all of this to tell you how I had to laugh at myself when, quite literally, I added "shower" to my to do list. Yes, people, I need to be reminded to take a shower. When you're living in a world of snow days, dirty diapers, snack times, laundry folding, cake baking, lasagna making and lunch cooking, it becomes necessary to have that little reminder that during nap time -- my ONLY "me" time for the day -- I must use that time wisely and get myself a shower. It's so funny to me that before kids, I would have never needed to be reminded to take a shower, much less have to schedule myself a shower. Life sure does change when you have kids, but I contend it's all for the better! Well, at least most of the time... ;)

Wednesday, January 12, 2011

Little Miss Observant

The other night I was helping LO get ready for bed (we have a standard nightly routine with BOTH kids, which I highly recommend), and it was time to choose which story she wanted me to read to her. To my surprise, she chose The Lion King.


I was surprised since she hadn't been interested in reading this story yet (she got it last month for Christmas) and wasn't sure what exactly about it had piqued her interest. On a side note, she hasn't seen the movie yet, either... I'm concerned that it'd be too dark or scary for her.

So I tucked her into her bed and snuggled up next to her and began reading. She followed along nicely and was very engaged in the story. She would occasionally interrupt me to ask, "Who's that?" since there were so many characters in the story, most with unusual names.

Fast-forward to when Simba returns to fight his evil Uncle Scar and take back his rightful place as King of Pride Rock. There is an illustration where Simba is fighting one of the hyenas. LO interrupts me to point something out that I didn't even notice. I do believe the child found a "typo" in the illustration -- obviously not in words but in the picture -- I'm not sure what you'd call it. A misillustration? Anywho, she kept asking me about it and I kept looking, trying to figure out what she was referring to.

Here, I'll let you take a look. Do you see what my 3-1/2 year old saw? Something is wrong with the picture below:


Do you see it? Do ya?

I'll give you a hint... It's a little somethin' extra on ol' Simba over there.

Go look again. You know you see it!

Okay, I'll give show you where it is:


What IS that? Honestly, it looks to be a lion's paw, complete with claws and everything. But it can't be one of Simba's paws, since they are both on the hyena. I thought maybe it was just some fur or something? But I see claws.

So help me, is this a drawing typo or what? I still can't get over the fact that my little daughter was observant enough to notice such a little thing.

Monday, January 10, 2011

Snow Day!

Yes, along with what has to be at least 80% of the country, we too received our share of snow here today. And of course I had to get pictures of the kids out in it. Honestly, I was snapping away as quickly as possible because this momma has NO LOVE for the snow. I'm happy to report that my sweet little boy may very well be a momma's boy. He had no love for the snow, either.

Now LO, of course, is another story. She's like her daddy and doesn't mind being out in the freezing cold snow. So she played while daddy shoveled. I popped out with Chase long enough to get a few pics, then brought my boy back inside so we could both get nice n' warm. For the record, he's hilarious. He sat on the floor in front of his bookshelf and "read" pretty much every single one of them while daddy and LO were outside. He sure does love his quiet time when his loud sister isn't in his face! Haha!

FINALLY! I get to go outside!

Don't I look beautiful in my snow gear? Never mind the fact I've been wearing this same winter coat since I was 18 months old...

My girl... she's gorgeous!

Chase was NOT happy about this photo op. Especially since he put his hand in the snow and realized how cold it was.
And with his new winter coat, seriously, folks... he can't put his arms down!  ((name that movie!))

Did I mention he wasn't happy?

Now daddy took his paci away. This is one very unhappy experience for my boy!

LO just looks beautiful... Chase is wondering why no one is getting him the heck outta there!

Well, well, well... Apparently this snow stuff isn't too bad if you're standing in it!

Hmmm... still not happy about this cold snow stuff on his hands.

Worst. Mommy. Ever. I made hubs lay Chase in the snow on his back so I could take some pics.
Guess what? Chase was NOT a fan!

LO helping daddy shovel the snow.

Fun! Fun! Fun!

Not so fun?

More fun!

Yes, my daughter played basketball in the snow. And for the record, this shot went in! :)

Friday, January 7, 2011

Interview with Bodie's Mommy

Here's a link to an amazing interview with Amy Bennett, mom to 11-month-old Bodie, one of Chase's little heart buddies. Amy shares her story from the moment she first heard of Bodie's diagnosis of Hypoplastic Left Heart Syndrome, through his delivery and his three heart surgeries.

I've told Amy that I think Chase and Bodie are long-lost brothers... they look a lot alike and have had similar experiences with HLHS (except that Bodie preferred a lot of extra attention and had an unusual penchant for infections). Bodie also has a big sister, Sierra, who is the same age as LO. Lots of similarities between our sweet little heart families!

Click here to listen to Amy's interview.

Thursday, January 6, 2011

Just Chase!

Probably not the most interesting blog post on the planet, but here's a little video of Chase playing in his room yesterday. I always enjoy our one-on-one quiet time, whether it's while LO is at school M-W-F mornings, or when Chase gets up early from his afternoon naps while LO is still asleep. We have a stash of toys that stay in his room (our play area/dining room is waaaay overrun with other toys) so he always looks forward not only to playing with the toys in his room, but I think he also enjoys the peace and quiet of playing without his obnoxious sister in his face the entire time.

You'll see he attempts to dance a little jig when the music plays on his toy...

I SO love this boy!!!

Wednesday, January 5, 2011

New Family Member!!!

Yes, folks, it's true.

After weeks of deliberation and internal discussions/arguments with myself, I finally pulled the trigger and ordered this bad boy:


Only $3.99 for overnight shipping, thanks to Amazon Mom (if you're not a member of Amazon mom, you should be!). This beut will be arriving tomorrow.

And it's mine!

All mine!!!

I've got two birthday cakes coming up in the next few weeks, so I figured now is as good a time as any to go ahead and add this little guy to our family.

((swoon))

Tuesday, January 4, 2011

Sunday, January 2, 2011

Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for single ventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children.  Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Chase’s story and the stories of so many of his heart friends and are eager to find a way to help. Here is your chance.

Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters by heart dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters by heart or to learn more about our mission, please visit our blog at heartsisters.blogspot.com or email sbhmoms@gmail.com with any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,

Saturday, January 1, 2011

Resolutions/Commitments

I decided this morning that I'm going to write a few resolutions commitments for the new year. I want to make goals that are simple, realistic and measurable, but most of all I want them to be meaningful for myself, my family and for others. This isn't a wish list for 2011, but a commitment I'm making to improve life in some way or another for all of the people with whom my life may impact over the next 12 months.

Here's to accomplishing all that we set out to do in 2011!
  1. Grow deeper in my relationship with Christ. This past year and a half has brought some very unexpected struggles and difficulties my way, and in the midst of my darkest times, God was there to pick me up and carry me through. He is my Savior, the One who loves me more than I can comprehend. He never gives up on me or forgets about me or chooses to make other people/things a priority over me. He loves me the same whether I wake up each morning, ready to give my day over to Him to accomplish His will, or if I wake up feeling deep pain and resentment towards Him for the things happening in my life. I'm ashamed to admit that I have not made Him the #1 priority in my life as He should be. He brought Chase through two open-heart surgeries and was by my side the entire time. Yet once we started to settle into our new normal, and Chase has been doing so amazingly well, I started to shift my focus onto my family and the "here and now" instead of on living my life with God as the center of my world. Not that I think it's wrong to love my family, but I know my first priority should always be God, then my husband and children. I can you from experience that unless God is the priority in your life, nothing else will work the way it was intended to. Marriages fall apart. Relationships with children are damaged. Things that once seemed simple when God was in control now seem to be a daily struggle. I want my life to glorify Him in all that I say and do, and I'm praying that some changes hubs and I plan to make in our family's life in the weeks and months ahead will help us refocus our attention on God and receive all that He has in store for us.

  2. Spend more time cultivating relationships in ways that DO NOT involve electronic forms of communication. This may not surprise you based on previous thoughts I've posted about here, but I'm quickly turning anti-Twitter, anti-Facebook and definitely anti-text. How lazy do people have to be that they completely disconnect from personal relationships in lieu of the ease and convenience of a quick text message or a Facebook status update? Is this the kind of world in which we want to raise our children -- one where you don't have to call Aunt Susie or talk to her in person or send a Thank You note in the mail for that awesome new birthday toy she sent you; rather, you just send her a text or write on her Facebook wall instead? Is that really the same? I don't think so. I for one do not plan to allow my children to grow up thinking social skills are no longer necessary and that kindness, decency and thoughtfulness are not necessary ingredients in growing relationships with their family, friends, teachers, etc. Don't get me wrong, I'm all for the conveniences that technology brings, but I do NOT intend to allow technology to displace relationships with the people who matter in my life.

  3. Help others. With the hustle and bustle of life, sometimes it's so easy to forget there are those out there who have things so much worse than we do. I have no idea what this "resolution" will look like in 2011, but I know God knows and I will be following His direction on this. I have a heart that desires to serve and have found that the capacities in which I had been serving for the past several years are no longer necessarily the right avenues for me any longer. There's one ministry opportunity of sorts that I'm VERY excited about but can't share with you any details just yet. But trust me, it's awesome and I'm very happy to be a part of it and am very hopeful you will support it as well once I can share more information. I'm praying God will show me some specific areas where He can use my talents and skills to glorify Him while serving those in need. I'm excited about what this will turn into as the year unfolds!

  4. Learn something new and/or develop existing skills in areas I'm passionate about. This may be as simple as taking a few cooking classes. I love to be in the kitchen, so maybe it makes sense to develop my cooking/baking skills. Maybe it's taking a sewing class or learning a new language. I don't know. But I do know I want to grow and enrich my current skills (or lack thereof) in some manner over the next 12 months. Any suggestions? I'm pretty much open to anything that doesn't involve sky-diving or jumping off a bridge.

  5. Be kind to others. This one is very simple. There's really no sugar-coating it. Be nice. Be thoughtful. Consider the feelings of others. Do nice things for people without expecting anything in return. I guess this one could even be considered a subset of #3 above. Hubs and I enjoy the feeling of doing something good, especially when we do it anonymously because we're not after the recognition -- only the joy and satisfaction of knowing we've done something nice. Maybe this is like a pay it forward sort of concept. Maybe my kind words to the cashier having a bad day will in turn cause her to be kind to the guy in line behind me who just found out his child has terminal cancer. You NEVER know what people are dealing with so it's always the right thing to do to be kind and show compassion to others. I pray I can be more intentional in my kindness in 2011.
I don't know if you're thinking 5 resolutions is too few or just right, but for me, I think I've got my work cut out for me to accomplish and/or improve in the areas listed above. And for the record, I'm glad I have this blog as I've become so appreciative of my friends who follow along with me and provide much-needed encouragement and feedback along the way. I hope I serve as an encouragement to you, too. If you ever need me, I'm always here for you!