My brush with Fame

I remember when I first heard the term "blogging" being thrown about. It was mostly connected to people "blogging" about politics, economics, social issues, etc. And then it spread. And some of my friends started blogging. So I was intrigued and wanted to know what "blogging" was.  I started with a little "blog stalking" as the kids call it - and found the Big Mama Blog. Immediately, after just a few scrolls through a couple of days entries, I knew she was the blogger for me. The one I could read (without knowing her personally of course) and not want to punch in the face for being so perfect. She wrote it all - the highs, the lows, the hilarity of motherhood. She's made me laugh hysterically and also sob at times (no joke and always when  you least expect it).

 And I ate up every word. 

And gosh, I have been for the past 4 years or so I think. My husband doesn't understand. He doesn't "get" going to my handy google reader first thing in the morning and checking out all of the bloggy world updates. He especially doesn't get why I would read about people I don't know. At any rate, her blog is real to me. Her stories are real. And guess what?A couple of weekends ago I found out that Melanie, aka Big Mama, is actually REAL.

She recently published her first book called "Sparkly Green Earrings", a memoir of sorts of her journey being a mama. I pre-ordered back in December and couldn't wait to get my hands on it. Not only was I excited to read 200+ pages of her stories, but it was also inspirational to me. Melanie always dreamed of writing a book, yet there were so many times in her life when she thought it would never happen. But God was listening to her silent prayers, the ones she didn't dare utter out loud, and was making a pathway for her to finally write that book. And oh my. How one day I want realize my dream of writing as well. I don't know how it will happen or what it will be about, but I pray that I am being faithful to God's call on my life - and maybe, just maybe, I'll publish a book too. Until then, I have people like Melanie to look up to as inspiration. (I say that like I know her. Y'all, I so don't. But feel like I do. And even as I type that, it seems a little stalker-ish. Promise I'm not : ) )

ANYWAY, Big Mama announced back in January that she would be doing a couple of book signings following the release of her book. And then I saw that she was coming to Houston - and not only that, but to a mall about 7 minutes from my house. I was so thrilled until I flipped open my calendar to discover that I was hosting a baby shower that very day at our house. NOT that I was upset to be throwing the shower obviously - but I was just disappointed that I would be missing the opportunity to finally meet Big Mama. 

Well on shower day, I decided that if it wrapped up early enough that I would hightail it to the mall as quickly as possible to see if I could catch the tail end of the signing. So after throwing the leftovers in the fridge and hurriedly wiping down the counters, I jumped in the car and said a silent prayer that I would make it. As I raced into the bookstore, I looked around and saw...nothing. The signing was over. Apparently she had wrapped up ten minutes before I got there. My heart sank. I didn't even realize what a big deal it was to me until that very moment. She had left a stack of books autographed, so even though I had my other copy, I still grabbed a few, one for me and 2 as gifts for my best friends here.

I paid for my purchases and just decided to wander the mall for a bit - and of course, in the back of my mind, I was thinking how cool it would be if I just were to bump into her, at J. Crew or something. But stuff like that never happens to me. I browsed mindlessly and then decided it was time to head home and maybe take a nap. As I was walking back to the entrance of the mall by the bookstore, I happened to glance to my right at the coffee/yogurt shop. 

And saw her daughter. And then a table full of people, one of which had to be Big Mama. Even from the back, I knew it was here. My breath sort of caught in my chest --- would I be so brazen as to go interrupt her yogurt and say hello? (And yes, I also realize we are not talking megawatt celebrity here. But as I tried to explain to Matt, while I like to peruse the pages of People, there aren't a whole lot of celebrities I am dying to meet. I mean, it would be cool and all but none of them really mean anything to me. Melanie's writing means something to me - and has inspired me in ways she doesn't know - there's my disclaimer about getting all excited for a writer from San Antonio)

I decided to go for it. So I haltingly walked up to her table and said something terribly witty like "Melanie? I'm so so sorry to interrupt you but I was passing the coffee shop and saw you, and well, I just wanted to say hi." I know. Fascinating, right? 

At any rate, next thing I knew she was inviting me to sit down next to her, told me she would personalize the autographed books I had, and we were chatting away. I was telling her what my favorite parts of her book was and we were just talking about life. It may have lasted all of 5-7 minutes but in that time, she could not have been more gracious or more of a blessing to me. Her 8 year old daughter Caroline was kind enough to take our picture as well (and even sign my book too!)

So there you have it. My brush with "fame". And quite honestly, that type of fame is way more my speed. Real people, living real lives, who are using their God-given talents to glorify Him - and seeing their silent prayers answered. Thanks, Big Mama! (Who is NOT "big" at all. Super tiny, beautiful woman with gorgeous hair that I may just envy a teensy tiny bit.)

Happy Day!

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Welcome to the World!

I am so excited to announce the arrival of my beautiful niece, Kayleigh Blaine Anderson, born on Feb. 22nd at 9:27pm, weighing 7lbs 14 oz and 21 inches long. Mom (Aunt Tina) and Dad (Uncle B) and baby are all doing great, although exhausted after a long day.

So amazing to see my little brother holding his little one. And amazing to see how much he looks like our daddy in this picture. Tears.

I can't wait to get my hands on this little one. For the past couple of months, I have been plotting my get away should we get "the call" that she was on the way. Kayleigh timed it perfectly for a weekend when nothing was really happening. However, my body had other plans and I ended up having surgery this past Wednesday, so I couldn't travel to be with them. :( But I am definitely making my way to A-town next weekend and hopefully will be able to help --- heck, it's been 2 1/2 years, I'll even take my late-night feeding turn just for old times sake.

Kayleigh, we already love you so much and can't wait to see how you will be a huge blessing to your parents and to our family. May you always know how much you were loved...from the beginning.

Love always from Aunt Meagan,

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Life in 4-6 month intervals

It's interesting...this living life in four to six month intervals. The time that elapses between one cardiology appointment to the next. Not knowing what that next appointment may bring. Will I be brought to my knees with bad news? Will we leave with a sigh of relief and wave bye until next time?

 I've said it before, but most days I don't even think about Quinn's heart. I mean, sure I am reminded of it when I rub my hand up and down her lengthy scar after bathtime or when I read about another heart survivor. But most of the time, we just live life. We have to. Quinn's life will NEVER be defined by her condition. It simply is a part of her, not her whole being. I don't treat her any differently than I do Ryan. I don't raise her with kid gloves. We (hopefully) are raising her to not let this hold her back in any way and to always warrior ahead, no matter the circumstances or conditions. 

And my prayer is that is a lesson that Ryan will learn from his sissy as well. 

At any rate, I do talk about it. A lot. I write about it. A lot. It's never a secret and her story is one that we've chosen to share. And this is where I'll mention the ill-timed comment on one of my previous blogs. I say ill-timed because it came in right as I was mentally preparing for Q's appointment today. Not that there is ever a good time for a bad comment. I don't want to waste my breath for someone that isn't worth my energy, but if  Anonymous, if you are listening, I will not be quiet about Quinn. Ever. For a very good reason. Because us sharing Quinn's story has done amazing things. It's opened doors for people to reach out to me when they are going through similar circumstances. It's opened doors for me to work behind the scenes in the CHD advocacy and support world. And most importantly, it is healing and cathartic to share her story. And one day, she may want to know all of this. All of the details. And here they are. And the thing is, Anonymous, as the commenters below you so graciously pointed out, our heart children are NEVER cured. There is no cure for CHDs. They are not "fine". There's no remission for a heart defect. My child will never know what it's like to be without a cardiologist - she will see one for the rest of her life. Even if/when Quinn enters a "maintenance" state, there will always be check ups, always be follow up, always be testing. 

So, as politely and respectfully as I can muster, let me tell you a huge NO. Heart defects are a part of our life and our story. They will be talked about. And if you can't handle it, then I suggest you hit that handy little "x" in the upper right hand corner, close out my blog, and never come back. That's fine with me. And if you are a "friend", go ahead and de-friend me on facebook or whatever you need to do. I have plenty of friends, ones that care and ones that don't hide behind the cowardly veil of anonymity.

 And that's the last time I will speak of such comments. If you feel the same way as "anonymous" then my suggestions above apply to you as well.

Now, for those of you who have continued to pray along with us, thank you! This update is for you:

Today was probably the best appointment we've had in a long time - praise God! We had a new doctor but I liked him right off the bat. Personable, easy-going, attentive. Quinn was a trooper as usual. I got tears in my eyes on the drive there because Quinn just kept saying, "Mommy, we go to Quinnie's doctor. Mommy, I have a special heart!"

Yes, you do, my love. Yes, you do.

We had a few tears at the start of the echo but then she settled into Toy Story and didn't complain the entire time --- even when they bent her head backwards over a pillow so they could ultrasound from the base of her throat to see down into the top of her heart. (btw, for those who don't know what an echo is, it's basically like an ultrasound of the heart, using a wand & goo similar to when you are pregnant). Echos are long - usually 30-45 minutes, which is like an eternity for a toddler. But she always surprises me with her patience and willingness to tolerate the procedure, especially for a child that never stops in real life. 

And it never fails to break my heart into a million pieces to see my little girl just laying there with a wand over her heart, thinking that is normal. Usually a couple of times during the echos, I have to turn my head to cry a few tears. Maybe one day I'll get to used to it? Actually, I hope that I never get used to it. I want to feel that pain. If I could lay on that table a million times for her, I would.

At any rate, after the echo, EKG, blood pressure checks, etc the doctor came into review the initial findings and talk about last year's MRI. Using that information and today's results, it's their belief that Quinn is doing remarkably well. Yes, she does have multiple areas of pumonary stenosis (basically obstructions) that are interfering with the blood flow to the lungs and heart. However, the right side of her heart is tolerating it and functioning decently. Not perfect of course, but clinically she is doing great. So the determination was made that we are going to hold off on the catheter procedure right now. (Cath would open up those branch pulmonary arteries and allow the blood to flow unobstructed). However, timing is important - you want to wait as long as possible so she continues to grow and those arteries can get larger. To go in early would just guarantee more interventions later. H pulmonary valve is still "bad" but functioning for her. So we leave that alone for now too. Heart repair still looks great and for all things considered, we can scratch any concerns about that failing off of our list.

So strange, this heart muscle. All of these "bad" things but it's working. Thank you, God. Time continues to fight in our favor. And I feel like maybe, just maybe, God is doing some healing things in there. Just 3 months ago, we were pretty sure we were headed for cath in the next couple of months. Now they aren't giving us a timeframe. Could be 6 months, 12 months or more from now. Praise Him.

We will return in four months to see our new doctor who thankfully offices out of the Katy location - amen for that too! To not fight med center traffic, waiting room, or parking is a huge blessing. All of that contributes to a very, very long day. As it were today, we were in and out within less than 3 hours. Trust me when I say that's a miracle. We even had time to swing by and do a little Mommy & Quinn shopping for her special treat. Bribery is not a common occurrence in our house but I do believe she totally earned a new pair of pink shoes. Which she is proudly marching around in right now, singing at the top of her lungs, and endlessly tormenting her brother.

She has already let go the events of this morning and is back to normal life. 

Which is where we'll remain. 

For the next 4 months.

Prayerfully yours, 

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CHD Awareness Week

CHD Awareness Week began on the 7th and goes through Valentine's Day. Because of the fun work I have the privilege to be a part of at www.heartwaves.org, we have been understandably pretty busy around here. However, I did want to share one article I wrote for Heartwaves. 

While it's aimed towards CHD parents, the lessons on advocacy and mommy's instinct are really applicable to anyone you are caring for across the board. 

Happy Heart Week, my friends near & far! I hope to return soon with more lighthearted posts :)

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Pulse Ox Legislation

I'm going to make this brief as we are down and out with the flu & assorted illnesses here. All of which have led to massive random facebook & blog stalking - but what's a girl to do when she's laying in bed? At any rate, very, very, very important news & your prayers are appreciated. Because I am lazy/tired/feverish right now, I'm just copying my FB status. But if you want to read more on pulse & my HUGE advocacy of why we believe pulse ox should be mandatory in all Texas hospitals, please click here. 

For any of my Texas Heart Friends, a friend of mine has scheduled a VERY important meeting with the chairperson of the TX Health & Human Services Committee next Weds to discuss mandatory pulse oximeter legislation. It is CRITICAL that Texas be on board with this --- too many babies are sent home with undiagnosed heart defects, which leads to major complications, and sometimes even sadly, death. A pulse ox is a painless, inexpensive monitor that is strapped to the newborn's toe, usually within 24-48 hours after birth. If it has a low reading, it can signal a problem and allow for further testing to be done before the baby is released from the hospital. If you are a heart mom or dad and would like to send a personal letter detailing your experience and why you are a proponent of pulse ox legislation (or if you are a nurse/dr/etc who sees the incredible value of such an important test), please email me your letters by Monday, meaganclanahan@yahoo.com and I will make sure they get to Trent Hamilton in time for his meeting. Thank you all! For all of our heart prayer warrior friends, please be in prayer for this meeting. It would be a HUGE step forward for CHD advocacy to have such legislation presented and approved.

Thank you, Team Quinn Heart WARRIORS!

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