Thursday, May 19, 2011

I had an incredible opportunity this past Tuesday - thanks to the unbelievable generosity of some of Dusk's relatives, I was able to steal away to spend an afternoon and night with some of the most lovely women. One of the things we did during our time spent together (which was a complete surprise to all of us - all we were told was when we were being picked up - nothing else!) was a Jesus Culture concert at the Nokia Theatre downtown. (If you're not familiar with Jesus Culture (I wasn't, before Tuesday night), they describe themselves as follows: "Jesus Culture exists to ignite revival in the nations of the earth. Our heart is to compel the Body of Christ to radically abandon itself to a lifestyle of worship, motivated by a passion to see God receive the glory that is due His name.") The concert was amazing and completely revitalizing. It was an awesome evening.

While the band had most of the people in attendance standing and dancing along, I stayed seated, since I really shouldn't be on my broken foot for that long (yes, still, that stinking broken foot in the way). So, I just sat there and let this amazing praise music just wash over me and seep into my body. Into my very, very, oh so tired body. And I realized, as I sat there, my eyes welling up with tears, that I.AM.EXHAUSTED. Mentally, physically, emotionally and spiritually EXHAUSTED.

I think all mothers of young children can relate, but truly, the exhaustion when you have a medically fragile child is at an entirely different level. Lately, I have really been beating myself up for not being the "perfect" mom. When it was just Sierra, I felt like Supermom, like I had everything together and was so organized and on top of things. And then Bodie came along. And our whole world shifted - and it hasn't quite shifted back yet. And I feel like it should have. I felt like I was making excuses for my inadequacies, by blaming it on Bodie's medical condition. I mean, he's doing great now. Other than meds 3 times a day and cardiology appointments every 2 months, he's just like any other kid. So why can't I get my life together? Why can't I be like any other mom? Well, because I'm not like any other mom. And our family isn't like any other family. In addition to the normal hustle and bustle of young kids, our family has been dealing with some pretty heavy duty life and death stuff this last year, and I don't think you can overestimate how that impacts you...

I hadn't really thought about it until Tuesday night (because Lord knows, when do I have time to just sit and think, right?) But the past 15 months, well, heck, the last 20 months if we go all the way back to the prenatal diagnosis, have been tough. We powered on through it, doing what we had to do go get through it, but now we're sitting more or less on the other side, far enough away from it (and hopefully far enough away from our next bout with this) to start to reflect upon it. And it's freaking scary.

I just had all these thoughts running through my mind as I was sitting there. I thought of the times we almost lost Bodie, as I sat next to him and cried as the doctors hurried in and out with worry in their eyes. I thought of the sweet 8 year boy who was Bodie's roommate - the vivacious little boy who went into cardiac arrest outside of Chuck E. Cheese and had lost enough oxygen to his brain that he was essentially a vegetable. We never saw that vivacious boy, only his moaning body, and the haunted eyes of his parents. I thought of the little 4 year-old boy who coded and passed away in the room next to us after Bodie's Glenn surgery, how minutes before it happened, he was joking around with the nurses, wearing his cute Buzz Lightyear shirt. I can still hear his mother sobbing. I thought of my dear friend Nicole, who wrote last week of the rain, and how it reminded her of the night they lost Travis, how she watched the rain come down the windows, as they performed CPR for 2 hours and she prayed that God would not take her son. And I thought of my sweet Bodie. I thought of the fact that I will very likely outlive my son. I thought about the big question mark over his head. I let my mind go to a place I rarely let it go.

You see, Bodie is doing well. Not just well, but fantastic, now. But with a cardiac child, you can never truly rest. They are never "fixed" - every "fix" brings new concerns, new worries. The reality is that some of these kids are simply "living on borrowed time." The problem is that you don't know whether your child is one of those kids or not. But you can't live life thinking about that. You have to enjoy life and to really let yourself think of how dangerous your child's heart condition is would absolutely cripple you. So, you push it down. You trust in God to protect your child, you focus on enjoying every moment you have with your child, heck, with all of your children. And you just keep living.

But it takes a great deal of strength and energy to push away these thoughts, even if you are a person of great faith. I have a lot of faith in God and I KNOW (I don't just think, I know) that He is watching out for my son. When the time comes for Him to take my son home, I know any separation will only be temporary, because He promises us an eternity with Him if we'll only believe in Him. But I am only human. And the human side of me is absolutely paralyzed with the fear that I could lose my son at any moment. So, I have to daily wake up and make the decision to turn my fear over to the Lord. But if I only mostly turn it over, there's still a part of me that is focusing on it, and stressing about it. And that constant exercise of pushing those feelings down but not yet completely turning them over to God means that there is a constant current of stress running through our household. It means I am edgy. It means that I schedule out every minute of my day so that I don't let myself go there and think these thoughts. It also means I don't have "me" time. And it means I.AM.EXHAUSTED. It's mentally exhausting to essentially live in a state of denial, if that makes sense - it's not natural.

Oh man, I am rambling. I think what I'm trying to say is that Tuesday night was really important for me. The opportunity to sit down and just BE, something that I, as a mother of young kids, never let myself do, was very eye opening. I realized that I need to cut myself some slack for not being a perfect mom, for not having the perfectly clean house, for not exercising like I need to be, for just not being the together and with-it mom I was before Bodie came along. I've seen things no mother should ever imagine, let alone see and I need to remember that when I'm comparing myself to the supermoms out there (by the way, thank you to my awesome sister-in-law Missy for helping me come to this realization!). I am still the woman I was before, but a different version. I am bruised. I am battered. I am tired. And I need to give all of it over to God so that my body and mind can finally rest. Not just 99.99% of it. But all of it. And I think that is the start of healing. Of being the best mom I can be for these 2 sweet munchkins.

So, the next time you happen to run into a mom of a medically fragile child, or a child dealing with some not-so-ordinary issues, say an extra prayer for her, give her an extra hug, offer to watch her kids for a bit so she can get away for some "me" time to refill her reserves...because you never know what's going on inside her tired mind. :-)



  1. <3 you and totally get this!

  2. Amy, this is a perfect post. Thanks for rambling - it always makes perfect sense to me!

  3. Makes COMPLETE sense- I have those days where it all seems to weigh heavier than others even though Aly, like Bodie, is doing fantastic- I couldn't ask for her to be doing any better. I'm so glad you got a night to get away- and I wish I lived closer- I would SO LOVE to hang out with Bodie and Sierra so you could have some mommy time or even a date night! Love you Amy!

  4. Ainsley Faith doesn't deal with as many issues as a heart kid, yet I can totally relate. The exhaustion of living with a disease day in and day out is overwhelming. This morning, we woke up to find that Ainsley Faith's infusion site for her pump had gone bad... So, her blood sugar was through the roof, she had ketones like crazy, and she was asleep in her bed which was SOAKED with urine (Nothing like a load of laundry at 6:45!). It just reminds me how quickly it can all go downhill. *hugs* I have nothing but respect and solidarity with you, hon. I'm glad you got to just be... It's SO important. :)

  5. Amy, I just wish I could reach through the screen and give you a huge hug!!!!!!! When you do your best "rambling"...that's when you make the most impact... not just with heart moms, but for moms like me who don't understand how physically, emotionally, and mentally draining it is to have a sick child. I think about you and a few other heart moms daily, and I only wish you al the most love, strength, and compassion. You are an amazing mother!!!!!! Sending a million hugs!

  6. Sending up an "extra prayer"...wishin' I could do more.

  7. I just want you to know that you are definitely not alone in this thinking. There was a time that I could say "ditto" to every. last. statement. I came to your "ah ha" moment about the same time you did (the boy's age wise that is). There just comes that time when you realize what YOUR life is now and how you have to live it to the best of your ability. There are a good number of days when I wake and don't give LJ's condition a second thought and days where I face the same fears you perfectly worded. I think that will always be the case but as long as the former days outweigh the latter, I think we are doing well. YOU are amazing. You handle Bodie's condition with nothing but grace and you are actively involved in the CHD community. Who cares if there are a few toys on your floor at the end of the day? Who cares if one kid is running around without pants on while the other is eating a cheerio off the floor? They are happy, you are still their hero, and you are still AMAZING!!