I was always concerned with their happiness mostly because I felt so bad all the time. I felt bad that Ava was allergic to milk, eggs, nuts, wheat, soy, beans, oats, shellfish, fish, chestnut and coconut. I felt bad that Ava experienced anaphylaxis over 10 times in her short life and that Gwen was allergic to milk, eggs, nuts, soy, oats, sunflower, and chicken and that I was working full time and sometimes coming home too late to play. I felt bad that I couldn't do more for them, be more present, be more fun, be anybody but who I was. It never felt like I did enough, or that they had enough, or that anything was enough.
But they always answered, "YES! We are happy girls!" And then February 2014 came, and Ava had high fevers that just wouldn't go away even with the help of antibiotics. A few weeks prior to that she had complained of joint pains that the doctor and I had dismissed as growing pains. We checked in to Lutheran General on February 27th to get IV antibiotics for what was supposed to be MRSA. Then the unexpected happened and the doctor came in to say that her white blood cells were high, way too high to be normal. They would need to redo the test because it was most likely a fluke and Mike and I were kind of pissed that they would need to stick Ava again. The results came back a second time and this time two residents brought us into a family room and, perhaps because of the novelty of it all, they delivered the news with smirks that they could not hide. It was so cool to them to be able to discover and diagnose leukemia during their field training. It was so devastating to us to hear that our beautiful baby girl would now have to fight for her life in a different way from all the years we fought before.
That's when I stopped asking if they were happy. Mainly because happiness was a luxury we didn't have time for but also because how could they possibly be happy in the middle of this storm. Gwen went from content second child to an insecure only child when Mike and I left to be by Ava's side. By the time she came to visit us at Lurie's, she was a different kid. I remember being so mad at my mom. Why were her pants too short? Why did she have small, hard boogers in her nose? I grilled her in an angry voice. But really, I was just mad at myself. How could I have failed to protect her innocence? And Ava. How could she ever experience happiness again now that death was at her door?
There are so many distressing things about this journey that sneak up as unwanted memories throughout the day. I'll catch myself looking at the girls playing and though my eyes are seeing the present, I'm whipped back to the past and my brain will simultaneously process a different memory and soon my eyes have gone blank, my mind is completely fixated on remembering the details of another day, and only the shrieks of the girls playing can eventually pull me out of my trance. It's like we've gone to war and have seen unspeakable things and now can't assimilate back to civilian life.
But then there are those memories that I treasure because I see how much has been done by this trial in regards to perspective.
There's one memory that comes back to me time and again and I welcome it.
It's midday at the hospital. The sun is streaming into our little room where we have nothing but a few clothes in the drawer and a few toys on the shelf. But that little bare room holds everything my heart has ever treasured. The girls are resting comfortably on the hospital bed with their limbs intertwined and their heads bent toward each other watching a show. Mike is in the corner eating a meal and I am on the couch/bed, my belly bursting with the presence of jude, simply observing the scene. When I think about it, I'm enveloped in an inexplicable warmth and a longing to go back to those days of simple joys.
And now, as I write this, I see that though taxed and tested we rode on the wings of joy. Because joy is not dependent on happiness. Happiness is a feeling that is ever fleeting, but joy is a state of being that is ever present from our relationship with Christ. Because though our bodies may fail, we shall see God.
"Yes, I'm happy! Can you make my hair as crazy as possible?" she replied. So I tousled her hair and flipped it this way and that to bring a smile to her face. And I realized that, this girl, she knew joy and every "Yes!" she exclaimed when I asked if she was happy was an acknowledgement that her soul was satisfied.
I am learning so many lessons in these later years of my life and the ones that have taught me the most have not been theologians or professors but small, unassuming and humble teachers, my very own children. I revere their childlike faith and hope that my heart would mirror the attitude of theirs. With or without hair, Ava has known joy in her life. It's not what I can give them, or what they have, or the circumstances of life that bring joy. It's the presence of God and we are filled with it in every corner of our house, in every corner of our souls. So whether in tousled crazy hair or a tousled crazy life, joy abounds.
“We're depending on God; he's everything we need. What's more, our hearts brim with joy since we've taken for our own his holy name. Love us, God, with all you've got — that's what we're depending on.” (Psalm 33:20-22 MSG)
Joy in tousled hair
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