Sunday, March 14, 2010

A Battle of a Different Sort

Four days after my son was born, I called my mother and I asked her WHY she didn't tell me. There I was, still waddling around with the world's largest pad in my pants, wondering why she didn't tell me how wonderful this whole motherhood thing was. Why she didn't tell me about the amazing feeling that I was experiencing? How totally unbelievably awesome it was to hold this little helpless raisin in my arms, to smell him and feel his heart beating against mine. She laughed and told me, "Honey, you wouldn't have understood."

And I do believe that is true. It's something that even someone as wordy as I can't really give justice to with any sort of explanation.

My favorite quote of all time is by Elizabeth Stone: "Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." I believe no truer words have ever been spoken. There is no way to understand or describe the unending waterfall of love we feel for our children ... and paired with that, the pain we feel where there is something going on in their lives that we just can't protect them from.

I remember when our very first heart doctor, Doctor Flippin in Lubbock, Texas, told us about Malkom's HCM, explained what it was, showed us the diagram of what his heart looked like under that broad, smooth baby chest. Malkolm was less than 1 month old, I think. I remember she was talking and I was looking at her hair, wondering how she kept it in position; I was wondering what kind of hairspray she used. I remember her nails were perfectly manicured and her make-up was pretty. And I remember when she told us that our son could die any time, that there is no way to predict when and that this was a very serious condition. It felt like someone had parked a Hummer on my chest. My ears were ringing and I was trying so hard not to cry, biting my lip, looking at Malkolm as he lay in his carrier looking off into space.

And then, I remember her telling us as we were leaving how beautiful he was. And I was angry. I was SO ANGRY at her for telling us our son could die anytime and then in the next breath saying what a wonderful baby he was. I look back now, and I still don't fully understand that reaction.

When I found out on March 1, 2010 that my 9-year-old son needed open heart surgery to save his life, I was shattered. In my mind, over the years I had somehow convinced myself that he probably didn't even need the medicine that he took every day.

On several occasions as he was growing up, he had to wear a halter -- this thing with leads (which, by the way, although sticky on the ends, are all but impossible to keep on a 2- or 3-year-old without a load of duct tape) that look like he is getting an EKG, except they go to a little box that he wears around his waist. This box records everything going on with his heart for a 24-hour period, and then we take the box to the hospital where they read the results and let us know if there are any irregularities or "events" that happen. Every time, the doctors said everything was fine. What a waste of time I thought it was. He's TOTALLY FINE. Why do they worry so?

Through his life, as he grew, so did his gradient. His first gradient measure at 1-month-old was 78. We've watched that number rise steadily as he gets older. When he is sleeping I can sit next to him and count his pulse rate just by looking at his chest, his little heart working so hard to pump that life-giving blood to his body, even at rest. It's not the most comforting thing ever, I must admit.

When the doc had told us he needed a defibrillator a few months ago -- more denial. I remember he said -- he really should have it "just in case." I was thinking - NO WAY they are going to cut my baby open on a "just in case" -- NO WAY. On a whim ... a guess?! I didn't even want to entertain the idea. The doc also mentioned heart transplant and I laughed. Whatever dude. Transplant this.

Going back to March 1st ... looking at the doctors faces as they explained ... when looking at the screen in that darkened room and seeing his blood pressure recorded, far too low for blood pressure during exercise ... I finally had to be shaken from my comfort zone and take reality by the horns. I found the trip coming out of La-La Land is not an pleasant one.

The ride home was probably the longest four hours of my life and I cried nearly the whole way. My husband, dealing with it in his own way, quietly, and me, wanting to talk about it with every family member, every friend who's number was saved in my phone, just trying to get a grip on what we were facing and what I was feeling.

Then, there's Malkolm, sitting in the back seat with his sisters, arguing with Malia over which movie they were going to watch and whose turn it was to pick. Totally oblivious of the seriousness of what just transpired. *gush of love*

No matter what happens, though, no matter what thoughts race through my head, I keep coming back to what Malkolm said. "Remember momma, God is in control!" And then I remember that God loves our children more than we love them. How is this possible?! He loves my baby Malkolm more than I could ever understand with my little teeny pea brain. God sees eternity in an instant, how can I even begin to question His decisions?! And how come I can't have just a bit of that complete confidence that someone much younger than I has in spades?

The Battle rages on, but I'm a fighter, standing behind General Malkolm with my own breastplate, helmet and sword, following his example.

I'm here for you baby. And I love you more than you'll ever know.


1 comment:

  1. You are an incredible writer. I loved so many things in this post. We're having our own health crisis over here with our son--nothing like what you having going on. I was just struck by how much we are alike in the fact that I want to tell ALL my friends and Max has absolutely no desire to talk about it with anyone but me! Talking just makes me feel better.

    What faith Malkolm has. I love that kid. :)

    What a journey you've been on with this. I cannot imagine how hard that would be to hear your tiny baby was in that much danger. Makes my eyes water just thinking about it.