Most days I'm ok, like really ok, with this heart thing. I feel like I made my peace with it long ago, maybe even before Quinn made her entrance into this world. I've always said I can deal with most anything, if I know what I am facing. And so, we've just taken this journey step by step, day by day, and now month by month. And that's what we all have to do right? Sick child or not. Just keep stepping forward.
Yet I have to laugh when people say I'm strong.
I am SO NOT.
I am a wimp. I am a worrier. I am always anxious before any appointment.
If I give off the appearance that I'm strong, it's because of one of 2 things:
1. I'm either faking it
2. God is intervening for me and carrying me when I need it.
I choose option 2, by the way.
But no matter my faith that God is with us in this journey, there are still moments where the breath is almost knocked out of me in thinking about Q's disease. And it is almost always at a time where I would least expect it. It's much like the grief process in that I suppose. When I lost my dad, for weeks I would be fine and then all of a sudden I would be hit with an ocean of emotions - maybe just triggered by seeing a University of Texas horns bumper sticker or a special song.
It's the unexpectedness that is so difficult.
Yesterday was a tough day. The tears came fast and furious. And completely out of the blue.
I had finally scheduled the twin's flu shots. It seemed we were never healthy enough during November or December to get them and we finally had a break to get them taken care of. My only dread in taking them was just dealing with two upset toddlers by myself, but it's been done before. So off we went.
When speaking with the nurse, she told me they were eligible for the flu mist versus the shot. Oh, fantastic! I was pumped. And then she said, "well, as long as there are no egg allergies or asthma history." "Nope, none of that," I said.
Then, "Well, wait, what about heart problems?"
(Never mind that the nurse hadn't flipped open Q's chart yet, which really is like a book)
"Oh, yes. No mist for heart problems or cardiac abnormalities. So we'll just give Ryan the mist and Quinn the shot."
My heart sunk.
It seemed unfair.
She already has been through so much and now a shot while her twin gets to have the mist.
Yes, I know it is JUST a shot.
But to me, it was representative of their health differences.
And no matter what I do to keep things equal with them, treat them the exact same, or buy them the same amount of gifts, I can't make this equal.
Of course, I wouldn't wish a CHD on Ryan for the world. And I'm sure when Quinn gets older, she wouldn't want that for her brother either.
I just want them to be equal.
And I can't do that.
For a crazy moment, I considered letting them both have the shot versus the 2 different versions.
But that didn't seem right either --- if Ryan could have less pain, then he should have the mist.
Ryan went first as the nurse laid him on the table. Squirt, squirt and he was done. Not a tear shed, just a sniffle as the medicine ran down his throat.
During that entire time, Q was literally pulling on my leg screaming "My turn, my turn! I next, I next." So afraid that she was missing out on something cool.
UGH. MY HEART.
Then I put her on the table and she promptly laid down just like her brother.
And then out of nowhere, she was jabbed with a needle.
Her face erupted with the unfairness of it all and I felt she was glaring at me. I know she wasn't, but I felt like I did it to her. Again. I'm usually the one with her during these painful things so I consistently feel like the bad guy.
In true Q fashion though, she did recover quickly. We scooted out of there, sucker in hand, and got in the car.
Then she said, "Mommy, leg hurt. My leg hurts." with the saddest voice. And then I looked at her brother, happily sucking on his lollipop, not even a care in the world.
That's when the tears started.
The ugly cry.
I tried to hide it from the kids --- they don't need to see that. But I was just so sad. Sad for Q. Sad for me that I couldn't explain it. Sad that their situations are so drastically different.
And the ugly cries pretty much continued the rest of the day, as they tend to do. I called my mom and cried to her. The unfairness of it all. The helplessness I feel. I can't take this away and it kills me. I can't make her heart better. All I can do is trust in God and pray that He continues to bless her doctors with wisdom and compassion.
I know that Ryan will have face his own sort of trials and tribulations one day. It may not be health related but he will have his own issues, as we all do in this life. But for right now, at the ripe age of 2 1/2, the difference is so prominent and pronounced.
So yup, most days I'm good with this thing. We're already 3 years down the road if you count the time since utero that we knew about the condition. And we've survived. And we'll continue to do so.
But I don't think I've seen the last of the ugly cries. And that may be ok, too.