Tuesday, March 24, 2015

This is what Mom Guilt Looks Like

When Sierra was in pre-kindergarten, I missed her Mother's Day pageant at school. I didn't mean to. I just misjudged how much time I had to get to her school and I got there just as her class was sitting down after performing. I cried buckets. I felt so, so awful. I swore up and down I would never do that again.

I was able to make it almost 3 years on that vow.

Tonight was Bodie's spring concert at his preschool. The school is big, with 6 different classes. So, for their Spring concert, the classes were staggered, with 2 going at a time. I raced through afternoon carpool, homework and dinner with the kids, to show up at his preschool at 6:20. Our call time had been 6:15, so we were frazzled, but I figured we were doing pretty well.

Until we walked into the room and realized none of his classmates were there. Because I had read the flyer wrong, and his class's call time had been 5:15. Their concert had been at 5:30, and they had just finished.

I cannot even begin to explain how awful I felt. I sat down and started crying. 

I know, I know. Not my best mom move. I mean, seriously, couldn't I just pull my crap together enough at least in front of the kids to act like it wasn't that big a deal? But, no, I couldn't. 

I let my baby boy down.

He was crushed. It was the first school concert he had actually been excited about.

So I balled, big baby tears, right there in front of his teacher, who was just glad we missed the show because I was an idiot - and not because something terrible had happened (let's face it, with our family, if we don't show up for a planned event, there's probably a 50/50 likelihood it's because some terrible tragedy has befallen us). 

I did calm down, eventually and came up with a Plan B. 

Any cake he wanted - within reason.
Seriously, like he couldn't have decided he wanted a little cupcake? No, it had to be a big ole freaking cake that we'll be eating for days. Ah, well - at least I didn't let him get the ½ sheet cake he originally wanted! 
And we came home, put on jammies (which, for Bodie, means a pull-up) and played games. 
As you can see, he was clearly distraught over missing the concert. 
(He was in the middle of his victory dance - never mind that he technically finished last. In our household, we play games until every player has finished - and then they get to do the victory dance when they finish.)

I know he won't remember this. Even tonight, when I was crying, Sierra looked at me and said "Mom, you've never done anything like this before!!!" I felt this immediate rush of relief as though God was telling me "it's ok. She doesn't remember when you missed her show - and he won't either."  So, yes, apparently there is hope yet for Bodie. 

But my heart hurts. Man, this mom stuff is tough. Or, well, more accurately, we make it tough. Because we care so deeply for the little ones entrusted to us.

When I texted my friend, who had managed to get her child to the appropriate call time for their performance, she replied back "I can tell you exactly what you missed…A bunch of standing there, not singing and picking of noses." 

Can I just get an Amen for friends like that?!? How would we manage these mommy years without friends like that?

So, the next time you're thinking to yourself "Oh.my.gosh. WHY won't my mom get off my back? WHAT IS IT with these guilt trips?" just know this - the only reason she's guilt-tripping you is because she has SO.MUCH.GUILT it has to go somewhere. If she doesn't push it onto you, she will literally explode. 
So, instead of getting irritated, just say "thanks, mom. You love me. I get it." 
You're welcome for keeping your mom from exploding.

Wednesday, March 11, 2015

An Open Letter to Congenital Heart Disease

Dear Congenital Heart Disease,

I hate you.

No really. I really, really do.

Hate is a strong word, I know. It’s one I tell my children not to use. But for you, CHD, it is more than fitting. 

From the moment we met you, when our son was diagnosed with Hypoplastic Left Syndrome when I was 17 weeks pregnant and the doctors held my hand and gently suggested termination, I have revered you with equal parts loathing and fear. 

We didn’t choose termination. We chose to fight you. We chose to fight for our son’s life. But wow, has it been a fight. 

You are a ruthless enemy. You steal young children before they’ve ever even had a chance to fight. Sometimes, you let them stay a bit, only to steal them once their families have gotten to know them, to love them, to begin to dare to hope for a future.  Sometimes you wait until they’re thriving and growing young adults, or husbands and wives with families. And suddenly, they’re gone. Just like that. And sometimes you don’t steal them entirely – just parts of them, as if somehow that’s easier to bear. Their ability to walk, to talk, to think. You are cruel, and, excuse the pun, heartless.

But I have news for you, CHD. 
We’re coming for you. 
Surgeons, nurses, cardiologists, therapists, and most of all, parents. 
You should be scared. Very, very scared.

We are tired of you calling the shots. Gone are the days when we blithely accept a 0% survival rate for conditions like Hypoplastic Left Heart Syndrome. Gone are the days where we are told to expect less of our children with Congenital Heart Defects. 

These children are growing. They’re thriving. Like my son, they’re surviving surgeries to go on and live amazing lives. They’re playing sports. They’re going to kindergarten, to elementary school, to junior high, high school, college, and beyond. When you see them running on the playground at school, unless they lift their shirts to share their scars, you won’t know. They look like any other child. 

For the first time in history, there are more adults living with CHD than children. That is no accident. That is the result of diligent efforts across the board to improve survival rates and quality of life   

But we want more. We have demanded more. And we’re getting more. We’re advancing on you, CHD. Oh, the advancement is slow. Painstakingly slow. Not nearly fast enough for parents. Probably not fast enough for my son. But make no mistake, we are gaining ground on you.

Thanks to advancements in surgery, children are surviving who simply would not have years ago. Had my son been born 40 years ago, he would have died within a week of birth. 30 years ago, he could have had “experimental surgery” – now that surgical course is standard and has survival rates of over 75%. The landscape for treating Congenital Heart Defects has changed dramatically.

Thanks to parents and practitioners working together, through organizations like the National Pediatric Cardiology Quality Improvement Collaborative, we’re improving outcomes for children diagnosed with CHD. Because we know there is strength in numbers, and success in teamwork. And if we’re going to beat a formidable foe like you, we must marshal our resources and work together.

Thanks to all of the advancements on the horizon (stem cell therapy, ghost hearts, mechanical hearts), there is more hope for children born with CHD than ever before.  And we don’t expect that technology to slow down anytime soon.

Like I said, we’re gaining on you, CHD. We’re not there yet. But you should be looking over your shoulder, because every day, we’re inching a little closer to catching up with you. 

And when that day comes, oh when that day comes that we finally catch you, it will be a glorious day. 


Sunday, March 8, 2015

Lovely, lovely locks

On Friday, our sweet, sweet girl got a big, big cut. After growing out her hair for the past 2 years, she donated 8 ½ inches of it to Children with Hair Loss!
I mean, have you ever seen anything this adorable?
Everyone in the hair salon was talking about how sweet she was to do something so kind. We are so stinking proud of her and her big heart. 

At this time last year, we were standing outside of our house, watching it burn down.
This year, we went to church, went out to lunch with friends, relaxed on the beach and celebrated our sweet girl's generosity.
In my book, that's a win-win.