Bigger Than This

As of right now, we have to be at the hospital in 29 hours.


Not long after this diagnosis came about, I was struggling (obviously), and had just begun a Bible study with my fellow nursery staff members. The message in our very first session hit home with me, and as I was driving home I was praying for my baby girl. The words that came into my head surprised me, if only because I hadn't really considered it this way before.

"I love her enough to give my life for her. You love her enough that you already did."

... I know, right?

**


Today was my last day of work until May 9, and following our staff meeting, my coworkers gathered around me to pray for Ally and for us as we're facing this giant unknown, and then they loaded me down with gifts to make the hospital stay and recovery easier on everyone. I've said the word too many times for it to come close to describing how I feel, but I'm overwhelmed. The generosity, the spirit of love and support, the assurances that so many people are willing and even eager to do whatever they can to help, it's just too much for me to process and comprehend.

Wow.

It's not just my coworkers who have responded so heartily during this struggle, either. Aside from family and friends, I'm blown away by the others who have kicked up compassion to a whole other level, people I've never even met reaching out to say they're thinking about her and praying for her, and speaking as someone whose life revolves around that little girl, that's amazing.

Week before last, my boss Dani asked if I would be willing to go to staff worship at the church and let them pray for me. The entire church staff minus the nursery workers (hey, SOME of us have to work ;) attend staff worship every week. Many of these people, in spite of the fact that I've been on payroll for two and a half years, I've never met. Some of them I know by sight or by name but not both, and some could poke me in the eyeball and I wouldn't know them from Adam.

I went, because even though I don't particularly care to be in the spotlight, I am not foolish enough to pass up the opportunity to get someone to pray for my kid.

I wasn't sure what to expect, but when we opened with one of Mom's favorite hymns, I was immediately aware that I was meant to be there, to hear that. It's one of those songs I grew up on, but only now, at this point in my life, do I fully appreciate the words.

How sweet to hold a newborn baby,
And feel the pride and joy he gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.

Because He lives I can face tomorrow
Because He lives, all fear is gone
Because I know He holds the future
And life and is worth the living just because He lives

It's almost like Instant Messaging from God.

Hey, Sara, relax. I've got this. I love her even more than you do. - G

It's truly something. Alan's devotional that day was about worrying. Or, more accurately, *not* worrying. And then he spent time on his knees, praying specifically for my baby.

Now... telling me not to worry is like telling my mom's dog, who lives with us now, that all squirrels are not evil. You say the word "squirrel" and Dream will go nuts, barking and looking frantically for the Tiny Gray Spawns of Satan so that she may destroy them once and for all. You don't have to say anything for me to worry. It's as natural as breathing.

And, oh yeah, that's my baby they're about to cut open.

But you know what?

My God is bigger than this. Bigger even than the most terrifying event of my life, handing my daughter over to virtual strangers and literally trusting them with her life. Which is ultimately also trusting them with my life, because she IS my life.

Here's a revelation:
I would give anything, do anything, if it were me instead of her. And in fact I can't say for sure that I wouldn't give anything for it to be anyone else but her. Not that I would wish it on anyone - of course not - but given the choice between my child and someone else? I'm going to choose my child. I'm being honest here.

And that's the key difference between God and me. The ability to sacrifice your own child... I am pretty sure I do not possess that.

Ahh, God. I see what you did there.

In Which I Get a Little Too Honest

"How is Mommy holding up?"

I get asked this question frequently these days, and I know that every person asking genuinely cares to know. It's not a passing "Hey, how are you doing?" that everyone expects the automatic answer "I'm fine," but I'll be honest with you, that is usually the answer I give them. Why? Because some habits are virtually impossible to break, and the truth is that I do not want to spend every day being honest about how I'm holding up.

Mom battled Hodgkin's Lymphoma for seven and a half years, the majority of that time spent in treatments like chemotherapy and radiation that made her feel sicker than she already did, which is the nature of the beast, of course. She ran fevers every day for years - literally years - and was constantly struggling with pneumonia. It's hard for your immune system to fight off illness when your disease and the treatment for it both attack your immune system. My point is that for the most part, Mom was sick and felt horrible for seven years.

And yet, every time someone asked her "How are you?" she would answer "I'm great!". Positive affirmation. You say it, you believe it, you basically will it to be true. This may seem to be optimism verging on naivety, but there's merit to it. If all you do is walk around thinking and saying how horrible you feel, what a bad mood you're in, and how much life sucks, you're going to feel more and more horrible, your mood will continue to decline, and life will keep on sucking. Not only that, but it's much easier to slip deeper into negativity than it is to rise above it.

Recently the ladies that I am blessed enough to work with formed a small-group type of Bible study for us, the nursery workers at the church, mainly because we all work there and therefore can't attend the studies the church puts on. Someone has to watch the kids, right? So on Sunday afternoons, a group of us leave the kids at home, sit in the comfortable chairs of the baby room and pray together, talk, and watch a video by Beth Moore. This series is called "Wising Up Wherever Life Happens", and the very first time we met, I had to force myself to get up and go. I was tired and down and not feeling well, but I made the decision to go anyway, and I was so very glad I did.

Barely into the first video, Beth told a story about a woman meeting for lunch with friends, and when asked how she was doing, she said "I'm okay... but kinda not."

Well today I am here to tell you, in (reluctant but honest) answer to each of you who have asked or wondered how I'm really doing:

I'm okay. But kinda not.

I'm not sleeping well, or much at all without medicinal assistance. My dreams are not friendly when I do, and I wake up just as tired as when I fell asleep.

My body is constantly on the verge of shutdown. I had my first ear infection in memory last week, along with a host of allergy-season-related issues and I've been on antibiotics and steroids for over a week now. I don't know if it's the medication making me feel so rotten or if it's stress or if it's exhaustion, or all three, but either way, I feel rotten.

Being in the (extremely lucky) position of a stay-at-home or take-her-to-work-with-me mommy since Ally was born has always given me a fairly reasonable ability to take my breaks when I needed them with minimal guilt. Ally has been with me nearly 24/7 for her entire life, and she is not what you'd consider a laid-back, easy-going child, so the times when I've felt close to my breaking point and needed to take a step back and remember who I am aside from "Mom", I've been able to do it.

Now, however, I feel guilty if I'm not one hundred percent patient and present in the moment. I would like to say that this is irrelevant because I have many many more years of being impatient with her or daydreaming about taking a roadtrip sans carseat and chatterbox. However, my brain just can not disregard the knowledge that yes, while I trust the doctors and God and believe that we are doing the right thing, there is always that chance.

I don't have to finish the sentence for you to know what I mean.

I would be flat out lying to you if I said I wasn't worried about the possible worst case scenario. You would probably know I was lying anyway, because anyone, anywhere, knows the risks to some degree, and I doubt that anyone, anywhere would be able to ignore the basic human nature of "What if?" I certainly can't.

I can hope, pray, trust, believe that everything will go perfectly, and I do, but at the back of my mind, there will always be "What if I'm wrong?" I've been known to be wrong before. It's happened. So bring on the guilt, because this Mommy is scared out of her wits of having regrets.



It's a tricky thing, needing to unload the burden and not wanting to burden others. I'm a hypocrite in this way... I am always ready and willing to let those I love (and even those I just tolerate) unburden themselves, but when it comes to turning it around the other direction, it's not so easy, even with the amazing support system I have around me.

Maybe kinda not, but I'm still okay.

Decisions

I am 31 years old.

I started my first job as a nanny when I was 18 years old, and ever since then I've worked with children, whether as a nanny full time or part time, caregiver to a child in my home, or my job now, working in a church nursery.

I've been married for seven years next month. My daughter turned four in November. I have a job and a mortgage and two cars and a privacy fence. I'm a grown-up, right?

My mother passed away four years ago in May, when Ally was six months old. We were very close and she fought a very long battle against cancer. Losing her was, without question, the most difficult thing I had ever experienced, and in spite of the hundreds of times I was told it would get easier with time, I'm finding that not to be the case, because I am just a big baby. I am a momma's girl, and whenever things are hard or whenever they're good, whenever Ally does something really smart or says something funny or has a really, really bad checkup that leads to open heart surgery, my head is always screaming "I WANT MY MOMMY!"

So being a grown-up means that the decisions are on me. In this case, of course, I have a shared burden with my husband. When it comes to decisions about Ally, the buck stops here. We're the final word.

For someone who is constantly in a mental temper tantrum over being motherless, it maybe should be cause for concern that I have so much authority. Did I mention that making decisions has never, ever been my forte? Just ask my mom.

So the diagnosis comes down the pike and all the brainiac doctors reach the same conclusion: Ally needs surgery, and she needs it soon. We need to go in and make it so her heart can function a little easier, a little more like it's supposed to, and we also need to install an electronic device so that if her heart doesn't do what it's supposed to and stops, it can save her.

Now, the big question: WHERE?

There are three places in North America with cardiologists who specialize in HCM. If Ally were 16 or 25 or 50 and needed this surgery, we'd be packing it up and driving to Cleveland to have her heart operated on. The adult CV Surgeon at the Cleveland Clinic is arguably one of the best in the world for dealing with this very same problem. It would almost be a no-brainer.

The problem is that Ally is four, and her heart is much, much smaller than an adult's. The surgery is much more complicated because of that, and that muddies the water quite a bit on who might be absolutely 100% the best to do her surgery. We're blessed to have UAB so close, with so many smart people, but the decision about where to take her is just not black and white at all.

Aforementioned genius HCM surgeon would be in the operating room with the pediatric surgeon if we chose Cleveland... that's an appealing level of expertise.

But there's a list a mile and three quarters long of upsides for UAB, too. Just to name a few:

• It's close to home. She has surgery and is in the hospital for a week, we get in the car and we're home in 90 minutes, versus 12 hours from Cleveland.

• My family and friends, with a handful of (important!) exceptions, are in or near Birmingham. It's where I grew up. Never underestimate the value of your support system, although you might because your support system is just not as good as mine. Sorry, it's the truth.

• Insurance is something not to be toyed with. Finding out if Dr. Zahka in Cleveland was covered for us to see him for a second opinion was a nightmare for me. Getting every single doctor she might come in contact with cleared through our insurance is not something I want to be focusing on under the circumstances. The money may not matter in the big picture, but this is not a nose job we're talking about. I would much rather know what's coming at me financially than just hope for the best.

• Dr. Kirklin is the surgeon at UAB. If you live in Birmingham, you will recognize this name. Half the city is named after his father. There's a reason for that, and a reason he's the head of the department.

It's such a tremendous burden to make the right decision when you could certainly consider it life or death for your child. We have some truly amazing people in our lives who we know, without a doubt, are there to support us, offer us advice if we ask for it and an ear if we just need to talk. Personally I would not have a shred of sanity left if it weren't for these people, but it ripples out so much farther than just people we are in immediate contact with. I've been sending out email updates since this whole thing started, and I get messages forwarded back to me by my family and friends, notes from people I don't even know saying that they are praying for us and for Ally, and I can't even tell you how much that means to me.

Why? Because I can't make this decision on my own. I'm just a child myself sometimes. I'm not capable of handling this on my own.



It's easier said than done... even though I can hear her voice in my head, I'm not Mom. But I am trying, and the prayers of all these people, the ones I know and the ones I don't, make a big difference. When I asked for prayers for wisdom so that we could make the best decision possible for Ally, people have been responding in spades.

Maybe there isn't a clear cut sign, flashing neon billboards with arrows pointing at the right choice. No message from God written plain as day in the clouds. Really, how great would that be? But that's not exactly how God operates. He speaks to your heart.

Right now, my heart is telling me we need to stay close to home for this. Maybe the overwhelming personal, selfish need I feel to have the people I love within easy reach if something goes wrong, or even if nothing goes wrong, is God's flashing neon sign. Maybe it's not weakness, but the message in the clouds.

Thursday morning, we're meeting with Dr. Lau again to get questions answered hopefully to the extent that both our hearts are at peace with the decision to stay in Birmingham, and from there, we move forward.