I am in prep mode for surgery. I can't believe that we are less than six weeks out from surgery now. I am sure it will fly by. Over the weekend I had some minor panic attacks over the preparations that still need to happen. The biggest thing is that Harlie needs a CT scan so her surgeon can fabricate the devices for her surgery. It seems silly to go to Boston for a CT scan. So, we are going to get the scan here and mail it to her. But, considering we are six weeks out, we have little to no room for error. Which makes me super nervous.
Years ago, Harlie was getting ready for heart surgery. Sadly, I can't remember which one. I suppose that happens when you've had five. Anyway, she had to have a heart cath prior to. We chose to have it done here in Richmond and have it mailed to DC. For whatever reason (I'm not judging here - just stating the facts) DC wasn't happy with the image quality from the heart cath. So, Harlie had to have another heart cath - in DC - and that pushed back her heart surgery date. There's an emotional issue with changing a surgery date. I don't know why exactly. But, it's true (at least for me, anyway). And of course, there's anesthesia and an annoying recovery involved with a heart cath. So, having to repeat it was a total bummer. I really don't want to repeat that learning experience.
So, we need to get the CT scan done asap. What if it gets up to Boston and the image quality isn't up to par? I'm no radiologist. So, how would I know? Well, I spoke with the surgeon's office on Monday and they agreed - this CT scan needs to happen ASAP. I found out by the end of Monday that it is scheduled for tomorrow (Wednesday) at 10:30am. Awesome.
Until I realized that is at the same time as Cooper's preschool end of year program. No biggie. Except that he has a speaking part. One line. But STILL!!! I wanted to be there to watch Cooper speak!! I am so sad. Now I just have to hope that Tom can make it there.
In other news...
On Saturday, May 18th, we had our second We Heart Harlie event. It was incredible. I have so much to say about this day, that it definitely requires its own special post (of course!!). So, I can only say that I am truly overwhelmed by the love and support that our family has received. From everyone.
Lynda Reider. Wow. She's AMAZING! Seriously. I don't know how I got so lucky when she entered our lives. I just can't say enough good things about that woman. She has put so much energy and passion into supporting us. It's unreal. I'm sure her husband has cursed our names at least once or twice. I don't know how I'll ever be able to thank her for what she's done for our family and for our little girl. I really do believe that she has changed the course of Harlie's life. I'll talk more about this later in this post. You'll agree with me, I'm sure.
Daisy Troop 5091 Moms and Daisies. I don't think that these women and girls had any idea what they were getting into when they joined the same Girl Scout troop as Harlie and I. To all of you, I'm sorry. ;-) But you girls have jumped in and loved and supported us. You are appreciated more than you'll ever know.
Our Family and Friends (who know us, including those who I've never met, but I consider dear friends - you know who you are!). I know we come with baggage. You don't have to support us through ONE hard time. You have to support us through YEARS of hard times. Through MANY surgeries. And I know that's difficult. Honestly, I don't know how you all do it. I'm exhausted living my life. I can't imagine how exhausting it is to have to support me living this life. I get it. And I'm sorry. I wish there wasn't a need. I wish I could be more supportive of each and every one of you. I wish I could be more of a giver than a receiver. But I hope you know that when I have a bad day, I think of all of you and you give me strength. Thank you.
Supporters I've never met. And those supporters who came out and walked in the rain on Saturday. This may sound egotistical, but I don't mean it that way... I hear that I'm amazing fairly often. For the record, I don't believe it. I am just an ordinary person (albeit, a naturally positive person) trying to have a happy, good life, and provide a happy, good life for my kids. I don't have a higher-than-average intelligence. Or a talent. I have the same goals as many. But you - I think YOU are amazing!!! You are supporting us - my family, our daughter - without knowing us! You are generous with your money and your time and your energy. That is amazing!!! I wish I could thank each and every one of you individually. Many of you came out in the RAIN to run, or walk. Many of you made the We Heart Harlie event your priority for the morning. I am just blown away by you. I wish I could shake your hand, give you a big hug and tell you what you're doing for my family.
What are all of you doing for me and my family? For Harlie?
For me and my family:
I'll be honest. Some days are REALLY hard. I don't like to talk about those days. I'd much rather be positive. But some days it's hard to be positive. And most of the time, I don't write when I feel like that. And when I struggle like that I think of all of you. Lynda, Daisy moms, Daisy girls, family, friends, strangers... and you all get me through. You don't know it. But you do. Somehow, I am not on meds and I'm not an alcoholic. I think I have you to thank for that.
She is six years old and she doesn't seem to have an ounce of a self esteem issue. Isn't that amazing?! When she was born, I pictured a completely different future for her. And it wasn't the kind of future you'd ever want for your child. I never, in a million years, dreamed of her being surrounded by a group of girls singing "That's what makes you beautiful." Or of kids selling lemonade to collect money for her. Or of kids giving her their piggy banks.
She's confident. She's headstrong. And she knows she's loved. How can a mother thank you for that? HOW?!?!?!?
I'll post again about the event, with pictures. It really was amazing. When I think about it, I shake my head. I keep thinking, "How? How did we get so lucky?" So many wonderful people there. So much love. Thank you. Thank you. Thank you.