Holding My Breath

I live my life in waiting. For a long time, I thought it was a "life phase" thing, something young people do because so much waits up ahead. Everyone waits to turn 16 and get a driver's license, graduate from high school, graduate from college, get their first job, get married. These are big life moments, trophy-worthy. We hold our breath and wait for them, exhaling when we get there. "I have arrived!" And then we hold our breath again and wait for the next one. In between is a lot of hard work and a lot of waiting. But we know the time will come, so we keep on keepin' on, as they say.

If you look at the Instagram picture of my life today, you would likely say that I have really arrived. I hit all those milestones. I am a part of the proverbial husband and wife with our two kids and two dogs. Despite the husband-still-in-school part, we're kind of... there. You know, where everyone ends up. We have arrived.

I stared at my ceiling two nights ago, trying to fall asleep the night before my husband's first doctoral exam and I heard myself think, "Once we get her cochlear and she can hear..." I was thinking about my daughter. And I realized -- I'm still waiting. I've been holding my breath, waiting for someone to fix her. It makes my chest tight to type that... but it's true. I've been waiting... for her.

If you've never been pregnant, it is the ultimate exercise in waiting. I waited for her for nine months and then she came, but she was sick. So we sent her to the hospital and we waited. "A week to two weeks" turned into 52 days, but we waited and the day arrived and she came home. But she was still not totally healthy, so we waited to fix her GI issues. And we waited to fix her sleep issues. And we waited to fix her development issues. We ticked off the days and tapped our toes and learned to be patient. Soon she would be all better and we could relax and enjoy her.

And the GI issues resolved (praise God!). And she started to sleep at night and eventually through the night (praise God!). And she met those developmental milestones and calmed down and cheered up (praise God!). We waited and we arrived and we waited and we arrived. What I didn't realize until last night is that I'm still waiting. In my head, she's still not fixed and we still have another hurdle to clear: her hearing. The surgery looms up ahead in my mind and I catch myself looking toward it, fearful but excited, afraid to put her through that but excited for her to hear. And I realized that deeper down there, what I'm really excited about... is to finally have my daughter. Whole. Complete. Fixed.

If you judge me for this, you should. It makes me feel nauseous to think that I would even feel that way. But I do. I like to think of myself as that mom who loves her kids "no matter what". And while that is true, when I really think about it, or if someone were to ask me, of course that's how I feel. Of course I love my daughter no matter what. But in the back of my mind, there's still a problem. And I realize that underneath the parts of ourselves we know very well sits a well of sin and darkness that is very, very deep. That we think we have a tight, secure lid on, but that honestly, blackens us. When we uncover it, we can repent, shine the light on the darkness, bathe it in the forgiveness of Jesus. But until we know those sins, they boil and bubble under the surface.

I stared at the ceiling two nights ago and thought about my daughter, my daughter who is deaf and who has the absolute cutest scrunchy-nosed smile in all the world. And I resolved to stop waiting. She is here, today, right now, just as she is. She is my daughter in the womb and my very sick daughter in the hospital and my daughter with a G-tube and my daughter who won't sleep at night and my daughter who hates to be touched and my daughter who finally held her head up and my daughter who laughs and my daughter who won't sit up and my daughter who will sit up and my daughter who can't hear. And in four to five months, she will be my daughter who can hear (Lord willing, with the help of her electronic ears). But on that day, she will be no more my daughter than she is today, than she was six months ago, twelve months ago. It will be scary and exciting, but it will not define us today.

The more I thought, the more I stared, the more thankful I became for the love of Jesus. To His children, Jesus says, "I love you." I love you today and yesterday and tomorrow and forever. I love you broken. I love you whole. I love you a prostitute and a liar and a thief and a murderer. I love you prideful and anxious and lazy and mean. I love you faithful to your husband and honest and giving and loving. I love you humble and peaceful and hard-working and kind. Jesus' love does not wait on us. His love does not wait on us to "get fixed". His love does not depend on our condition. He loves us because we are His children. And "God shows his love for us in that while we were still sinners, Christ died for us." (Romans 5:8) God shows His love to His children in that while we were still broken, sick, dying, He wrapped His arms tight around us and loved us to His death. Does He promise healing? Growth? Holiness? Yes. Does His love for us depend on that? Wait on that? Need that? No. Above all, I want my daughter to know that love, the love of a God who knitted her, knows her, loves her. And I want to model that love. I want to love my daughter like God loves her, not waiting or holding my breath... but open-armed, honest, true.

Called to Love, Not Fear

"You shall love the Lord your God with all your heart

and with all your soul and with all your mind. 

This is the great and first commandment. 

And a second is like it: You shall love your neighbor as yourself."

(Matthew 22:37-39)

For the first couple weeks of my daughter's life, we weren't sure if she was going to live. I wrote about the gift of her life here, so I won't go into all that again. The natural response to pain is to draw back, roll into a ball, and protect yourself. When someone comes at you with a stick, you don't smile broadly and wave. The same is true for emotional pain. My life was not in the balance; my daughter's was. For me, the pain of her situation was the heart-wrenching reality of discomfort and physical pain in someone I loved dearly, someone who grew inside my body, and the possibility that that someone might cease to exist. Just as I would have thrown up my arms to block the striking blow, I encased my heart, layer by layer, adding on with each scary thing that came. I protected myself and hardened my heart to keep from being pulverized.

As we moved through the worst of it and we saw that she was going to survive the early weeks, I allowed myself to revisit the picture in my head of our little family of four. She would be a part of it and I started to open my heart to that again. As she started to pull through, however, the doctors began to give us more information about the long-term possibilities she would be facing, scary things like seizures and hearing loss, blindness and brain damage. All of these things required a "wait and see" sort of response. We had no answers in the moment; we were left to wonder and tread water.

Once again, I started building the wall around my heart. "She might never hear. I'll just give up on ever sharing music with her." "She might not see. I'll just give up the dream of teaching her to read." "She might have brain damage so I'll just accept the fact that she might live with us forever." All of these survival mechanisms, these knee-jerk responses, they allowed me to protect my own heart from feeling the wound of loss should the time come that we found it.

One day at the hospital, I held my daughter in my arms, my cold heart sitting with her out of obligation and frenzied fear, when she opened her eyes and looked right into mine. She had been so sick that this was one of the first times I actually got to see her, to look into her beautiful little face (bald though she was) and really see her. Her eyes were so warm and she just trusted me, never considering for a moment that I might have built a wall between us, that I was keeping her at bay. She didn't know a wall. She knew the warm arms around her and my eyes. In that moment, I remembered a verse that I memorized back in college, during my panic attack days: "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6-7)" I looked at my sweet baby and prayed to God for his peace, the kind of peace that surpasses all understanding, the kind of peace that if someone were to ask me, "Wow, Aleah, you are so calm through all of this. How do you do it?", my response would be, "Ask the Lord, I have no idea."

That peace didn't hit me like a rock, but the Lord started to work in my heart. I started the see the wall between us and every time I felt scared or instinctively moved to protect myself, I saw the image instead of myself with my arms outstretched, like how I wait for my son to run to me when I want to give him a hug. I saw that picture of myself and I realized that God had not called me to protect my heart and stay safe from pain. God had called me to love. He had called me to love a little girl who might die. He had called me to love a little girl who might never hear a word I say. He had called me to love a little girl who might never speak, who might never walk, who might never know who I am. All the possibilities, all the terrible things that might be at bay, they were not for me to fear. God called me to open up my arms, open them as wide as they would go, and welcome my little girl in.

I'm crying as I write this. It is not an easy thing. Love is never, ever the easy thing. So how is it ever possible? First, fear must die. The Bible promises over and over that God abides with us always and we never need fear. "Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.” (Deuteronomy 31:6)" That is just one example; there are so many more. As my fear of losing my daughter slowly left, replaced by the peace of God that I prayed for, my heart began to open up in love. How? Again, through the power of prayer and the Holy Spirit.

1 John 4 explains love, its source and power: "Beloved, let us love one another, for love is from God, and whoever loves has been born of God and knows God. Anyone who does not love does not know God, because God is love." Not loving = not knowing God. God doesn't simply love, He doesn't simply give us the power to love, He doesn't say, "Go, love" and then leave us to figure it out. He IS love, so if we know Him, we know love and have the power to love. "There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love." With God, we can love without fear. We can open up our hearts and love and love and love and we do not have to fear death or judgment or trial or evil or the end of days.

In the famous 1 Corinthians 13 passage that is read at every wedding ever, the Word says this: "Love bears all things, believes all things, hopes all things, endures all things. (1 Corinthians 13:7)" Bears, believes, hopes, endures -- what? ALL THINGS. All things. That means no thing, nothing, is outside the power of love to bear with, to believe in, to hope for, to endure. Love survives the easiest parts and the hardest parts. Love continues despite every obstacle that stands in its way. Love perseveres because God is love and nothing breaks God. How can we really know that? By seeing the picture of the greatest act of love the world will ever know. "Jesus uttered a loud cry and breathed his last. And the curtain of the temple was torn in two, from top to bottom. And when the centurion, who stood facing him, saw that in this way he breathed his last, he said, “Truly this man was the Son of God!” (Mark 15:37-39)" 

I have been through hard days with my daughter and we will have hard days to come. Mothers and fathers around the world have endured all manner of pain and fear, and instead of curling into little balls, they have opened up their arms and welcomed in their children. This love, this open-armed, reckless, fearless love is just the tiniest small picture of the great love of a Father for His children, a love that would nail His Son to a tree to bleed, bearing the weight of all the darkness of humankind, that you, that I might have the light, that we might have true life without fear, that I might have the power to look into my daughter's eyes and say, "I love you, bitty. I love you right now, and I love you whatever comes our way."