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, 

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. 

Click here for: Mommy's Instinct

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

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!

Yup. My friends know me.

I have pretty awesome friends. Not bragging, just a fact. They have laughed with me, cried with me, loved on my kids, loved me through the good and the bad. One of my best friends in H-town (whom I pretty much met the first year we moved here and we have just lived all sorts of life together - she ROCKS), gave me the most kick-a Christmas present.

For the past few months, we've instituted mommy playdate/happy hours most Thursdays - our hubbies both work long hours and we are SAHMs, so we are DONE by the end of the week. Our kids are now at that perfect age where they can actually play together, entertain one another, and we live only 7 minutes apart. It's awesome.

(Disclaimer: HH playdates do not begin until after the respectable hour of 5pm, we have a max one drink limit, and most of the time is spent corralling the children, and over the chaos, just trying to catch up with some girl talk. It's all very responsible and respectable-like.)

Anyway, she knows my love language.

Here was my present:

Vino2Go

Basically a wine sippy cup for Mommies.

Are you kidding me?

It's so perfect, I can't even tell you. I'm not going to lie - it was put to good use the other night when the kids needed to burn off some energy after their naps (and after 5pm) until Daddy came home. We usually play in the front because of the shade & all of their toys/bikes are out there. But glass & kids don't mix. Vino2Go? Perfection. About 5 minutes into our playing, Ryan's basketball nailed my sippy cup. Spilled wine, yes. But no glass. YES. 

(And I do realize how classy I must look in my yoga pants & baseball cap standing out in my front yard with my wine sippy cup, but I.don't.care. :) ) 

Anyway, my affinity for wine has been well-documented with all of my friends --- even if we go to a Mexican restaurant, I go for the wine. I haven't been able to stomach the smell of tequila and 'ritas since LSU freshman year. And so even friends whom I haven't seen in awhile apparently think of me when they see cool wine related products.

 ie: my friend P posted this same exact link to my FB page today and said "thought of you". ha. Great, I'm THAT wino :) Not sure if I am proud. But I'm impressed that my friends know me so well. (I don't really want to write another disclaimer, but all imbibing is pretty much responsible and adult-like. I have been over 21 for 11+ years now or something like that.)

I do think it's a great product for tailgating, boat rides, or wherever your adventures take you :) You're welcome. (And no, I wasn't compensated for this post - just wanted to share. Click on the link above if you're interested.)

Cheers!

When It All Seems a Bit Unfair

Most days I'm ok, like really ok, with this heart thing. I feel like I made my peace with it long ago, maybe even before Quinn made her entrance into this world. I've always said I can deal with most anything, if I know what I am facing. And so, we've just taken this journey step by step, day by day, and now month by month. And that's what we all have to do right? Sick child or not. Just keep stepping forward.

Yet I have to laugh when people say I'm strong.

I am SO NOT.

I am a wimp. I am a worrier. I am always anxious before any appointment.

If I give off the appearance that I'm strong, it's because of one of 2 things:

1. I'm either faking it
OR
2. God is intervening for me and carrying me when I need it.

I choose option 2, by the way.

But no matter my faith that God is with us in this journey, there are still moments where the breath is almost knocked out of me in thinking about Q's disease. And it is almost always at a time where I would least expect it. It's much like the grief process in that I suppose. When I lost my dad, for weeks I would be fine and then all of a sudden I would be hit with an ocean of emotions - maybe just triggered by seeing a University of Texas horns bumper sticker or a special song.

It's the unexpectedness that is so difficult.

Yesterday was a tough day. The tears came fast and furious. And completely out of the blue.

I had finally scheduled the twin's flu shots. It seemed we were never healthy enough during November or December to get them and we finally had a break to get them taken care of. My only dread in taking them was just dealing with two upset toddlers by myself, but it's been done before. So off we went.

When speaking with the nurse, she told me they were eligible for the flu mist versus the shot. Oh, fantastic! I was pumped. And then she said, "well, as long as there are no egg allergies or asthma history." "Nope, none of that," I said.

Then, "Well, wait, what about heart problems?"

(Never mind that the nurse hadn't flipped open Q's chart yet, which really is like a book)

"Oh, yes. No mist for heart problems or cardiac abnormalities. So we'll just give Ryan the mist and Quinn the shot."

My heart sunk.

It seemed unfair.

She already has been through so much and now a shot while her twin gets to have the mist.

Yes, I know it is JUST a shot.

But to me, it was representative of their health differences.

And no matter what I do to keep things equal with them, treat them the exact same, or buy them the same amount of gifts, I can't make this equal.

Of course, I wouldn't wish a CHD on Ryan for the world. And I'm sure when Quinn gets older, she wouldn't want that for her brother either.

I just want them to be equal.

And I can't do that.

For a crazy moment, I considered letting them both have the shot versus the 2 different versions.

But that didn't seem right either --- if Ryan could have less pain, then he should have the mist.

Ryan went first as the nurse laid him on the table. Squirt, squirt and he was done. Not a tear shed, just a sniffle as the medicine ran down his throat.

During that entire time, Q was literally pulling on my leg screaming "My turn, my turn! I next, I next." So afraid that she was missing out on something cool.

UGH. MY HEART.

Then I put her on the table and she promptly laid down just like her brother.

And then out of nowhere, she was jabbed with a needle.

Her face erupted with the unfairness of it all and I felt she was glaring at me. I know she wasn't, but I felt like I did it to her. Again. I'm usually the one with her during these painful things so I consistently feel like the bad guy.

In true Q fashion though, she did recover quickly. We scooted out of there, sucker in hand, and got in the car.

Then she said, "Mommy, leg hurt. My leg hurts." with the saddest voice. And then I looked at her brother, happily sucking on his lollipop, not even a care in the world.

That's when the tears started.

The ugly cry.

I tried to hide it from the kids --- they don't need to see that. But I was just so sad. Sad for Q. Sad for me that I couldn't explain it. Sad that their situations are so drastically different.

And the ugly cries pretty much continued the rest of the day, as they tend to do. I called my mom and cried to her. The unfairness of it all. The helplessness I feel. I can't take this away and it kills me. I can't make her heart better. All I can do is trust in God and pray that He continues to bless her doctors with wisdom and compassion.

I know that Ryan will have face his own sort of trials and tribulations one day. It may not be health related but he will have his own issues, as we all do in this life. But for right now, at the ripe age of 2 1/2,  the difference is so prominent and pronounced.

So yup, most days I'm good with this thing. We're already 3 years down the road if you count the time since utero that we knew about the condition. And we've survived. And we'll continue to do so.

But I don't think I've seen the last of the ugly cries. And that may be ok, too.

Word of the Year

I've seen a little bit about this going on in the bloggy world and it just spoke to me. I'm not so much a resolution girl. I like to make plans and follow through but I don't particularly care for setting myself up for potential failure. And it's bound to happen if I put down a well-meaning list of goals. Rules (like our house rules) are one thing; promising to drive thru Sonic less and run more (or at all) is another.

So I like the idea of one word to define my year and my attitude.

I have to admit I sat down and had to really think about this one.

If you know me (or have read this blog for any time at all), you know that one word is VERY difficult to me. Hell, one paragraph is difficult for me. When I get word limits for my magazine assignments, it almost causes me to break out into a sweat because how can they tell me to write only 1,000 words when the article NEEDS at least 1,200. Well, it may not need 1,200 but I don't edit myself well. I guess that's probably why I don't make the big bucks. 

Anyway, yes, the one word - see what I'm talking about? Already off on a tangent.

Word for the year: 

CHERISH

When I think of what's coming down the pike this year - the birthdays, the birth day of some special babies, the celebrations of marriage, and who knows what else, I just want to cherish.

More days that I care to admit, I run through the motions, just trying to survive, get the job(s) done, take care of the kids, get dinner on the table, and make it to dinner without my face falling flat on the table. I want to be more PRESENT and CHERISH every.single.moment. (except if we have a repeat of stomach bug 2012 in which case I will skip the cherish part). 

My biggest fear is that I will look back on these years of being home with the kids and regret that I didn't live more in the moment. I live and die by my planner and in many cases, that is my sanity, but I also want to take some time to just roll with life. Take up friends on those last minute dinner plans or playdates. Run down the street in the rain just because we can. Strip down the kids and paint really messy things because screw the clean up. Know what I mean? Cherish these innocent moments. In 2 1/2 years my kids will start school. If those 2 1/2 years fly by like these, then I will blink and it'll be here.

So cheers to cherish. Every single day.

Hello, 2013. Clanahan Family Rules.

I'm not really going to wax philosophical about 2012. It was a wonderful year in a lot of ways, not so wonderful in some ways, but it was God's gift of time to us. And for that I am grateful, grateful for each year. Grateful for each moment with our family and friends.

As I was thinking about 2013 and what it may have in store for us all, I kept coming back to some sort of Clanahan House Rules. I guess because we've spent a fair amount of 2012 disciplining and attempting to instill values in R&Q that we believe are important. Anyway, here is a list I've come up with initially. It may be modified somewhat as we go on, some things are just hopes for the future, and some are already constants.

Clanahan Family Love Rules - 2013

1. Love the Lord, Your God, with all your heart, mind, and soul. (adopted from Luke 10:27)

2. Cherish your family above all else.

3. Respect your father, mother, and sibling always. We will not always get along or agree, but we must always respect and love.

4. Treat your friends and family the way you want to be treated. Share what you have, even if it's the last animal cracker or your favorite car/baby doll. And be generous in spirit with your giving.

5. Be polite ALWAYS to EVERYONE. Say "thank you", "please", "yes, ma'am/sir", "no, ma'am/sir". Requests will not be honored until these words are used. : ) Always says "I'm sorry" even it's the last thing you want to do. Be the bigger person. 

6. Write thank you notes for everything. We are privileged to be blessed with family and friends that care about us and do amazingly generous things. We WILL write thank you notes and Ryan and Quinn will be a part of the process, even if it's just scribble.

7. Laugh. Laugh through the hardest days, even when it may be through our tears. Laugh because we live an amazingly blessed life. Laugh, laugh, and laugh some more. 

8. Institute a family night/day. Just time for the four of us, no interruptions, and a time for us to enjoy being together, whether it be watching a movie together, playing with cars, or going to the zoo. The time is special if we are together.

9. Stress less. Life is too short. I've been reminded of that all too often lately. Yes, there will be stressful days but we can react differently to the stress. Nothing, no amount of money, bigger house, nicer cars, fancier toys, or cuter clothes can make us truly happy. It is just not worth the stress to attain those things - mo' money, mo' problems. 

10. Celebrate as much as possible. We have some awesome things coming up in 2013 to celebrate --- my niece Kayleigh will arrive in February, the twins will turn THREE in June, and Matt and I will be married 10 years in September. Those are just the big things that I know about. I know there will be many more little things (or maybe big???) moments to be thankful for and enjoy. I want to celebrate everything and give thanks.

Blessed to have experienced 2012. Looking forward to 2013 - here we come!