Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Ready, Set, Wait….

When our phone rings at 1:22 in the morning, we answer it. Largely because Philippe’s mom is not doing well.  This morning it was a call from the CCU (Cardiac Care Unit) telling us that Dr. Backer, Charlotte’s surgeon, had to postpone the surgery until tomorrow (Wednesday) because an emergency had come up.

I listened, took mental notes, and hung up. Philippe asked me three times if I was sure of what I heard and if I was sure that it really was the CCU. I thought, “Because a prank call at 1:22 in the morning would be so specific as to cancel your daughter’s heart surgery?!”  But, I pulled the number up on caller ID and dialed it. Maybe the night nurse thought I was nuts, I don’t know. She found the gentleman who called me and he confirmed that I had heard correctly.

We rolled over and went back to sleep. I drifted off doing a mental inventory the fridge to plan dinner and realizing that I could pick my brother up from the airport. (We found out he was coming a day or two ago.)

At 7:30 a.m. Charlotte padded into the room and said, “Mommy, what happened?”  I asked her to crawl into bed with me (Philippe had left for work) and I told her. Her immediate reaction was to whimper and crumble. Poor sweetie, such a big change of plans. Once I got her attention, I told her that we could have a real vacation day with no worries or concerns or pain. AND, she got to have a real visit with her uncle. And, by the way, was she ready for breakfast.

I also told her that in 2007 we had taken her to the hospital, waited for several hours (without breakfast or lunch) and then got sent home . That surgery went swimmingly, I told her. So this delay seemed right to me.

We had a great visit with my brother, who now really needs to learn to play Blokus. Everyone is asleep now and getting rested to try again tomorrow.

Our hearts go out to the family whose emergency delayed Charlotte’s repair. We don’t know know who they are, but we know we have something in common.

Side note:

Because this is Heart Defect Awareness Week, Saving tiny Hearts Society will have an ‘About Us’ table along with our ‘Make A Valentine For Kids in the Hospital’ Station at Lurie Children’s tomorrow in the cafeteria around 10:30/11. Dr. Wax plans to come and do magic tricks. This event is a great way to meet families, see doctors and nurses and should end in the early afternoon.

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What Would You Be Doing 18 Hours Before Major Surgery?

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After her pre-op appointment (more on that later), Charlotte led us to the 900 N. Michigan building. She was determined to play piano for an audience at Art for the Heart, a shopping event benefitting Saving tiny Hearts Society. She was so touched and honored to have been asked to play, even the day before her surgery, that she simply couldn’t imagine not trying. At about 5:15, just as the vent was beginning and before it got into full swing, Charlotte hit a wall. She had to play and then she had to leave. So, Francie, the director of StHS, and her merry band of volunteers stopped what they were doing to listen to Charlotte play a Steinway.

Not bad for 12 hours before surgery, no music (umm, we left it at home), and a broken pinky, right?!

Her reward? A snuggly blanket for the hospital and heart-shaped cake pops.

Bravo, Charlotte. You’ve proved once again that a mended heart may be the strongest heart of all.

StHS_210


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Why I Blog (about Charlotte)

Sometimes I feel as if I’ve become that clichéd blogger, you know the one who is really prolific at first and then can’t continue. Or, that the only things I think about blogging would redefine this blog as a “Mommy Blog” (and I contend that it is only tangentially that).  I am pretty sure that my formerly most avid readers don’t check in that often anymore, using the blog as a customized Caring Tree (medical update platform) and checking in only when there might be a medical update.

Recently, however, I received two comments on the About page which reminded me of why I blog, two mothers whose children (ages 1 and 8, respectively) are CHD patients. One is even a truncus patient. Both sought to get in touch with me, to ask questions and commune with a parent who knows what they are going through.

At the same time,  WordPress’s The Daily Post asked us about who we blog for. So I’ve been thinking a lot about why I blog, for whom, and who my reader might  be.

When I started the blog in 2005, I blogged for family and friends who wanted up-to-the minute information about Baby Sprout while I was pregnant. Once she was born, they wanted to know about Charlotte’s surgery and recovery.  I started with email updates. Then my mother noted that she was forwarding them to her friends who also wanted updates. She suggested a blog. I said, “Mom, do you know what a blog is?” She said, “No. But you should have one.” Never one to defy my mother, I started Charlotte’s Journey Home.

My intent was to blog for family and friends to keep them informed. We were adamant that no one should visit because we didn’t want people to remember Charlotte as a tiny tube-filled creature.  The blog brought my readers into the hospital with us, with gory detail sometimes, and it spared me having to rehash details in individual phone calls. When I tapered off, my brother would bother me to update more often, especially with new photos.

While Charlotte was in hospital in 2005, I realized that I was blogging for myself as much as for anyone else. I had a difficult time bonding with Charlotte at first because I was so afraid. I took 17 rolls of photographs–documenting the gravity and joys of the situation. But, truly, I was using the camera as a lens through which to see my darling baby because sometimes looking at her without the lens hurt too much. The camera and the blog helped me process it all. And at 2 a.m., writing the blog helped me clear my brain so I could sleep.

And then came the first message from the parent of a child born with truncus arteriosus and another from the mother of  child being fed by a g-tube. Then a message from Francie Paul of Saving tiny Hearts Society, who has become a hero and a friend. And, when Charlotte was four, an adult truncus arteriosus survivor found us–Jessica Renshaw has given us a picture of best case scenario outcome, complete with college graduation, marriage, and a lovely future  When she and Charlotte met in the summer of 2009, they compared scars and teddy bears and Charlotte learned, palpably, that while she is unique, she is not alone.

Then Charlotte started reading the blog and I realized that I have inadvertently given her a gift–a baby book that goes beyond babyhood. I’ve captured key moments in her life and my thoughts about them. One day I’ll print and bind it for her, perhaps when she embarks on the journey that takes her to her own home.

Certainly, I did not set out to blog for other parents of medically complex children, but I was grateful that they found us and in finding us found solace. You see, in 2005, there were very few blogs (can you imagine?!) and very few ways to meet parents of CHD kids  We tried the American Heart Association, we asked the hospital, we looked for parent groups. We found only worst case scenarios and nothing to give us hope.

It’s hard to imagine, really, how much has changed in 8 years, not just in my motivation for blogging, but in how and why my audience has changed. WordPress founder Matt Mullenweg talks about how blogging has gotten harder–there are so many voices in the ether that audiences are harder to come by. He discussed “the intrinsic value of blogging,” describing how he blogs essentially for two people–himself (present and future) and one other person, as if he was writing a letter.

I love Mulleneeg’s ideas. But, I have to say that I blog for a few more people–for the parents who might stumble upon Charlotte’s journey and realize they are not alone; for my friends and family who want occasional information; for myself; and, now, most of all, for the little girl whose broken heart created the reason for my words. She is my joy, my heartache, my inspiration, and my heart.

Now, I shall hit “Publish” and this will go into the ether–to be Tweeted, Facebooked, Tumblred, and ProShared. Lots of people will hit “like” on Facebook, but how many will get to this word?  I wonder!