Seven Years Later

Y’all. It’s heart month. The time when all the good heart mamas are posting pictures and educating like the amazing chd advocates they are.

Me? I’m watching a baby sort through the office trash.

But I know that looking back is good. Remembering God’s faithfulness is good. And reminding all the moms-to-be to get a simple test that could save their baby’s life is good.

February 20, 2008, was the day that our world was turned upside down. The day a simple anatomy scan for our baby turned into a journey we were not expecting.

Today, I’m trying to teach that baby girl how to read. She’s as stubborn as she was the day she propelled herself from my body in a blaze of glory. The HLHS didn’t kill us, but discerning the subtle differences between “b” and “d” may just finish us off.

It’s been seven years since we first found out, four years since her last surgery, and a mere 12 minutes since she knocked me out with her quick wit and sassy beauty.

Are y’all tired of me saying it yet?
Streams of mercy, never ceasing, call for songs of loudest praise. 

 

 

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Putting the “heart mama” hat on for a bit…

A few nights ago, as The Sound of Music was being watched live around the country, my Facebook newsfeed was extremely busy. There were the positive and negative comments about Carrie Underwood and cast. And then there were other comments about a commercial… a St. Jude’s commercial to be more specific. No doubt, these are always moving commercials with a combination of celebrities and children who are in various stages of chemotherapy. But this particular commercial lit up a closed group of heart mamas that night for a more specific reason; Shaun White, the famous olympic snow-boarder, was among the celebrities.

This isn’t his first time supporting St. Jude, and I don’t in any way begrudge him his charity there. But what is extremely hard for many of us is that Shaun White is man with a congenital heart defect. He survived open-heart surgery as a child and he is clearly thriving in spite of living with a serious heart condition. Shaun White has been asked on many occasions to speak on behalf of research for CHDs. He has refused every time. He doesn’t want to be defined by his CHD (totally understandable! I don’t want Charlotte to be defined by hers, either). And yet it is mind-boggling to me that he would lend his celebrity to help some sick children, but not others to whom he has a direct tie.

And before I start getting nasty comments, please know that I am not saying this because I think it should be either/or. I know families who have children with cancer, and who have lost children to cancer. A sick child is a sick child, and while there may be varying degrees of suffering, it all sucks. Plain and simple. I guess what many of us in the CHD community don’t understand is why it can’t be both/and. Congenital heart defects kill more children each year than all the childhood cancers combined, and yet CHDs get a paltry amount of funding for research. Pediatric cancer, on the other hand, gets tons of funding (which is great) and as a result of that funding and places like St. Jude’s, the mortality rates of pediatric cancers has declined by more than 50% in the last decade (according to the National Cancer Institute). That is great news, and that is what happens when there is funding and research.

Part of this is our fault… we don’t have a cohesive organization* like Susan G. Komen (in terms of name recognition) or a hospital dedicated to the research and treatment of congenital heart defects. There is no place where heart parents can take their children for free care and treatment. (Charlotte’s first hospital stay cost more than our first two houses combined, and she was only there for three weeks. We know of families who spend months at a time in the confines of the CICU. We will be forever thankful for excellent health insurance.) There are organizations around for children with heart defects, but they are mostly small and disconnected and many are just geography-specific.

Why am I sharing all of this? Just to complain? No… I think it’s my way of raising awareness. Or maybe I just had too much time to think about it this morning after reading a letter another mom wrote to Shaun White.

I’m sharing this letter because it gives a little insight into the life of a heart parent, especially this time of year when we are being asked to give to St. Jude’s at nearly every turn.  I don’t agree with everything she says (especially about St. Jude’s in particular), but I do completely understand her frustration.

This line in particular nailed it for me: I know how horrible cancer is and have known my whole life.  I didn’t know a thing about CHD until I was offered to terminate my baby before he was born or put him in a hospice the morning after his birth.  I had no idea the fight I faced, and neither does most of America.

I don’t know that I publicly shared that particular part about our journey with Charlotte, that we were given the option to “terminate” her at 18 weeks gestation. I was informed that I only had two weeks to decide. I don’t know the data on how many parents choose this option, but I do know that they are higher than we would probably care to think about.

I think that’s another reason why CHds aren’t as well-known… childhood cancer strikes children who have been living typically normal, healthy lives. They are children and grandchildren, classmates and friends (not always, I know; babies can get cancer, too). CHDs show up in newborns, and many, like Charlotte, get through the more “dramatic” stages of treatment before they start preschool. If you were just meeting Charlotte for the first time today, you would have no idea that she has ever been sick a day in her life. Her little constellation of scars is hidden by clothes. You couldn’t possibly know that she is being kept alive by a tiny piece of Gore-Tex and plumbing technology to rival the ancient Roman aqueducts.

Again, this isn’t about elevating a childhood birth defect over a childhood disease. They are both horrible (as are the myriad other childhood birth defects and illnesses I haven’t even mentioned). This is me using my little space on the internet to share my thoughts on a topic close to our family. And maybe I’m hoping the next time you see Shaun White on a St. Jude’s commercial or on a pack of gum, you’ll think about kids with CHDs, too.

*Some of you may be thinking, “what about the American Heart Association?” What, indeed. The AHA has different chapters across the country, and while they have some discretion over how funds are spent, in general they spend less than one penny per dollar raised on research, treatment and support for CHDs. The vast majority of their funds go to dealing with adult-onset heart disease. So if you give money and time to the AHA, continue to do so; they do a lot of great work. But please don’t do so because you think that your donation is helping children like Charlotte.  If you are interested in helping, the best place is The Children’s Heart Foundation.

Progress Report

I thought I would give a little school update for Charlotte, now that we have five weeks under our belt.

As most of you know, we are doing Classical Conversations this year. I was a little intimidated by the volume of memory work when we first started, but Charlotte is sailing through each week and showing me that she is much more capable than I gave her credit for.

If you are curious about memory work and why I am a believer, this article is a great resource (it’s also great if you’re just wondering what Charlotte and I are doing each day): Memory Work: A Personal Journey.

Just for a little sampling, here are some of the facts that Charlotte has memorized in five weeks:

  • History events from Creation to Alexander the Great

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{This is the stack of History Timeline cards she has memorized.}

  • The continents and oceans
  • Western European countries
  • Latin conjugations
  • English grammar facts
  • Counting by 1s, 2s, 3s, 4s…and so on through 10s.
  • Seven biomes
  • Types of consumers (herbivores, carnivores, omnivores)…

And she knows these history sentences that totally crack me up. Her favorite one is about The Crusades, “Eleanor of Aquitaine and her son, Richard the Lionhearted, fought the Turks for Jerusalem during the time of the Crusades, which occurred from 1095 to 1291.” She has little hand motions and everything.

So how does she know all of this? Well, most of it is set to music (I bet you can sing all of We Didn’t Start the Fire if you had to!) which helps both of us. And we practice it once or twice a day depending on time.  And we listen to the Timeline CD every time we are in the car.

Why does she know this? Well, the above article explains this so well. So you should really read it! The short answer is that the memory work now lays the foundation for more learning later.  When she’s in middle school and learning about the Crusades, she will already have names and dates firmly lodged into that pretty little head of hers. So she can focus on learning more about the context, the reasons and the consequences without getting all stressed out about memorizing the names and dates for tests. (But seriously, read the article.)

And just to be clear, Charlotte has memorized and can recite simple facts. She can tell you who signed the Magna Carta, but she can’t tell you what it is, much less why it matters. So please don’t be too impressed with my teaching!

I think I mentioned before that Charlotte also presents a little talk each week in class. I haven’t taken a video because I don’t want her to be distracted, but trust me when I say she is a little pro. She and I come up with a topic each week, and then Tim will illustrate some note cards for her to use as talking points. So far she has talked about camping, her trip to Florida, going to an Orioles game and our new house.

In addition to CC, we also do math, writing and reading each day. I am using Horizons Math, Handwriting Without Tears and the BOB books for her reading.

I know it sounds like a lot, but it really only takes us an hour to an hour and a half each day. Thanks to some very wise advice from veteran homeschooling moms, I am not trying to take on too much or add to the curriculum. We’re not doing crafts, and I would be ashamed to say that we have yet to set foot inside of the library if we were not so well-stocked at home with books (thanks to Regular Nana!). I really had this idea that I would need to do crafts for every lesson and be “that mom” who checks out all of the season books at the library at one time (you know who you are! Ha!), but I have freed myself from those expectations, and as a result we are having a great time learning without adding unnecessary stress.

Our new neighborhood is great for walking, and we are just a short walk to the park, so we have been taking regular nature walks for “recess,” which has been a treat for both of us.

I think this post is long enough, but please feel free to ask any questions or share any homeschooling tips you have.
And here is a little video of C practicing her timeline. She seemed to do better before the camera came on, but her little voice is too cute not to share!

Growin’-Up Girl

The girl started kindergarten this week. We had our first day on Tuesday, after we dropped Sam off at school.

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I offered to take her out for breakfast to kick off the new school year, but she wanted to wait.

“Let’s just go home, do my school, and then you can take me to get a donut when I am finished with my work. Like a treat!”

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Okay, Baby Girl.

We have been keeping our work time at about an hour each day this week with math, writing and alphabet review. And we have been doing lots of reading together on the couch. Charlotte was a little bummed the first day when she realized that her “shows” aren’t part of the learning day, but she seems to be surviving without the TV!

Charlotte has her first class day (we call it co-op) for Classical Conversations (CC) on Friday, so next week we will be adding more time on to focus on our memorization work.  Please click on the link if you’re interested in knowing more about CC. I was familiar with the Classical model before we even had kids, but the more Tim and I looked into it, the more we were convinced that CC was the right program for us.  The mission of CC is Knowing God and Making Him Known. What could be better than that?

We’re only three days in, so I won’t pretend like we have it all down yet, but I am keeping in mind all the wonderful advice and wisdom I have received from my fellow homeschooling moms who are a little further down the road. We are keeping it light, and I am not stressing out about everything being perfect. We start each day with a Bible story and a prayer, that we will be good stewards of our “class” time, and that we will honor God with our work.

I’ll be writing more as the year progresses. I would love your prayers as I endeavor to teach Charlotte this year!

Proximity

It was our last night in the hotel.

The thunder woke me before she could, but I could hear her walking over in the dark. And then there she was, standing next to the bed. The lightning was barely visible through the thick hotel curtains, but she saw enough to insist that she needed to sleep with us.

I reminded her that we were all sleeping in the same room, so there was no reason to be scared. She wasn’t having it.

I woke Tim up, thinking he should just go ahead and get in the bed with Sam since it was only a matter of time before we had two afraid & wide-awake children on our hands. He obliged, and before long they were all asleep. Except me, of course.

Charlotte’s head barely had time to hit the pillow next to me before she was out, in spite of the fact that the storm was still thundering away. I thought how silly it was that she was suddenly able to sleep even though the storm had not changed.

No, the storm had not changed, but Charlotte’s proximity to me had changed. She was nearer to me than she was before, and that was all she needed to be at peace and go back to sleep.

I thought of how so many people have commented over the years on how at peace Tim and I have been through all of Charlotte’s surgeries and health struggles. Of course we don’t have some magical formula. We haven’t tapped into some deep well of inner peace that we conjured up by our own will. Our “secret” is no secret at all… it was all in our proximity to Him.

I don’t know what your particular storm is right now. Maybe you are in the midst of one, or maybe you see the storm clouds gathering on the horizon. Maybe you’re on the other side of a particularly bad storm, and in the aftermath you realize you spent the entire time worried and afraid.

I can’t promise that your storm will resolve the way you want it to. I can’t guarantee that the destruction caused by the storm won’t be worse that the storm itself. I can absolutely promise you that closing the gap between God and you will bring unspeakable peace in the middle of it all.

Your storm may not change, but when your proximity to Him increases, you may rest your head in peace.

But as for me, the nearness of God is my good;
I have made the Lord God my refuge,
That I may tell of all Your works.
-Psalm 73:28 {NASB}

 

The BABY is FIVE.

It’s been five whole years since we first met our baby girl. I can’t help but be a little sentimental about Charlotte and all she’s been through; every birthday is another blessing and another reason to thank God that she is alive and so healthy.

Five years ago we didn’t know what to expect after she was born.

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These days we still don’t always know what to expect, but our thoughts about heart defects are less frequent as we are more focused on shaping her heart and pointing to the One who made her.

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We had a great morning before church with breakfast from Dunkin’ Donuts (her favorite) and then we opened some presents.

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Charlotte has developed a love for horses over this past year, so we had some horse-themed gifts, and we’ll also be giving her riding lessons this fall.

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Sam was the gift director.

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Sometimes they fight, but when they are getting along, it is pretty sweet.

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I have said it before, but I can’t say it enough: thank you so much for all your love and prayers and support for Charlotte and all of us over these past five years. Her scars will always be a reminder of what she has endured, but we are thankful that those scars are not the end of her story.

Happy birthday baby girl! We love you!

The Baby Graduates

From preschool, that is.

Today was Charlotte’s graduation ceremony.

My tiny, seven-pound baby girl is officially a kindergartener.

Here is the side-by-side shot of her first day of school and her last:

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Her hair has grown, and she has gotten a lot taller. She had a couple of growth spurts this year that had me scrambling to find shirts long enough (thank goodness for camisoles!). She learned how to write her name and cut shapes and she made some really good friends this year.

This was our family’s third year at Good Shepherd, and we will certainly miss the teachers and staff next year. Today was bittersweet to say the least.

I did get a little video of the girl singing with her fellow four-year olds… I hope you enjoy!

 

Ice Cream Thursday

Last week Charlotte’s class hosted a Tea for Mother’s day.  Afterwards I took her out for ice cream {any excuse for ice cream!} and to my delight she picked a flavor that matched her dress. It’s the little things, you know?

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And yes, she is a little Sarah/Sissy {my sister}, in more ways than one!

Oh, for the LOVE!

I am so, so sorry to those of you who check this blog. I am sure seeing the same blog post for over a month is nearly driving you crazy. I know you come here for the pictures, not the waxing poetic about a singer you never heard of.

I have been wanting to write. Every single day I think, I should write something today. But then the dishes need washing and some child needs either dropping off or picking up, and the dog wants to go out and my pile of laundry is eating the inside of Tim’s closet. And I have been doing lesson plans and we’re about to start leading a care group and, well, sometimes the lure of being somewhere else but my house is too much.

So here’s the latest, with pictures:

1. Sam is doing great at school. He has about three weeks left of being a first grader. {Insert “where does the time go?” comment here.}

2. Charlotte will finish up with preschool tomorrow. Gah! The baby is done with preschool.

3. My public speaking class ended last Friday, and they have asked me back for more next year. I will be teaching speech again first semester, and then debate second semester. We’ll see how that goes!

4. I will also be teaching kindergarten next year! Charlotte has enrolled in the inaugural class of the Tousey School of Arts & Sciences. {Which means I’ll be homeschooling, if you didn’t get that all ready!}

5. I will not be homeschooling Sam. You can all exhale now.

6. Summer plans are already in the works; Sam will be going to a week-long camp for fly fishing. He will be riding a bus to camp each day, so I am interested to see how that goes. The kids will also be spending weeks in Florida and SC, without mom and dad. {Woo hoo for all of us!}

7. I am calling this my “swan summer.” I am in dire need of some fitness, so we rejoined the Y, and I will be back to spin class today, and I am going to take up running again… something this body with an extra 30+ pounds needs desperately! I am also having some extensive dental work done. I have a veneer on my front tooth that is about 25 years old. The children sweetly refer to it as my “golden tooth.” I am looking forward to finally being able to smile and converse without being so self-conscious. I will have before and after pics for you later.

8. This Friday night Tim and I will be launching our new care group. Our church has a series of small groups that all members are asked to join. Last summer we did the training to be care group leaders, and two weeks ago we were gently “kicked out” of our care group and given the blessing of starting our own. We would covet your prayers for this group; these are unique groups in that we do provide care for one another, and this can mean walking with others through difficult circumstances and issues. We want to be attuned to God’s voice as we open our home and our lives to our little group of friends.

9. I have some final speeches to grade now. Have a great day!

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{I realize now that most of my photos are on my phone… I’ll post more later!}