These past two weeks, I’ve been really struggling with the decision we made 4 years ago when that specialist told us Annie would never live.
“Something is wrong with your baby’s heart,” he said. “It won’t be worth it.”
Laying there watching my 18-week-old fetus kick and squirm on the theater-sized screen, I wondered if he meant she won’t be worth it. Certainly no stranger could tell me the value of my child’s life.
But in my silence, he pressed on. “Trust me. You don’t want to do this. It’ll be too hard. Too expensive. Too complicated. And she probably won’t live anyway.”
There he said it. She. We’d named her Annie the day before but he didn’t know it yet. So what he meant was Annie, growing wrongly in my womb, wouldn’t be worth all the inconvenience.
Thankfully that day we didn’t know all the “inconvenience” that her life would entail but we knew we still wanted her.
I whispered an argument, interrupted by broken sobs, that we were willing to take the chance.
He advised again, “I just don’t think she’s worth it. By Arkansas law, you still have time. We can take care of this today and you can try again for a healthy baby that you want.”
He was right. I didn’t want Annie to have only half of a heart. I had never even heard of that, but I was smart enough to know that no one can live on half of a heart. I was also determined enough to know that Annie was still a life we should say yes for.
That was the day that I stopped being myself anymore.
That was the day I found out that a mother means more than a nighttime comforter, diaper changer, and lullaby hummer. That was the day I turned into a fighter. I realized that day that I would have to defend and protect my child’s life in so many ways beyond being sure her car seat is buckled right.
That is the day that Matt and I committed to each other that, together, we would give Annie every chance at life that she could get.
That has looked like:
-Refusing another specialist’s recommendation for abortion two short weeks later.
-Leaving our 1-year-old with family to board a medical flight to Philadelphia with our 4-day-old bobble head.
-Suffering the complete shock that our smiling 8-week-old was in severe heart failure. And again, flying to Philadelphia to live in the cardiac ICU and Ronald McDonald House for 31 days.
-Handing our 3-month-old over for open heart surgery number 2 with only 60% chance of ever getting her back alive.
-Celebrating the miracle of healing when her surgeon announced Annie’s normal heart function on her pre-op heart echo and when she endured a seamless 5-day recovery.
-Suffering complete shock again when January 2016, her cardiologist announced Annie’s regression into severe heart failure again. Worse than before. Adding to his tearful report: not knowing how much time we had left with our happy girl who was being honored as a survivor that month.
-Being denied the third stage surgery she needed because her heart was too sick. Being denied a new heart that she needed because her body was too well.
-Celebrating life to the fullest for each day we have it with a once in a lifetime Make-A-Wish trip to Disney. What a total dream!
-Having the doctors’ argument over how sick her heart still is and how severely it continues to fail, end in agreeing to the third stage surgery on August 1, 2017, to complete the Fontan physiology for Annie’s heart.
-And finally most recently enduring another unbearable complication. Annie’s body isn’t happy with her new Fontan physiology. Just this month, she has been diagnosed with PLE, an incurable disease that ensures the days that Annie can live with her broken birth heart are fleeting.
It’s hard to admit it, but…
-watching Annie endure countless “pokes” for blood draws and IV placements
-holding her down to shove medicine in her mouth that she spits back in my face
-knowing that her life is now guaranteed to be daily marked by her heart deficiency
…I actually confessed to a friend that I feel bad for choosing life for Annie. For fighting so hard and effectively for this difficult life that she’ll bear.
My friend reminded me of a huge truth that I had so easily forgotten.
God chose life for Annie way before I ever did. God’s purposes for Annie’s life make this version of her life and health the only way that Annie can live her best life. A heart healthy Annie wouldn’t be better for her…or me. God has given Annie all that she needs to fulfill the eternal purposes that He created her life for.
God made the right choice. And when I chose to obey Him by choosing life for Annie, so did I.
That day 4 years ago, we had no idea what we were getting into. But we knew that life is always worth it. That love is always worth it, even when it’s terrifying and hard and uncertain. We said yes to trusting God with a path we never expected that we didn’t know how to walk. It’s been worth it.
Even in the past hardship that we have faced and in the upcoming hardship that Annie will face, we are daily proving Psalm 138:8,
“Lord, you will show that I was right to trust you.
Lord, your faithful love continues forever.
You have done so much for us, so don’t stop now.”
Today Annie’s dreaming about what she wants to be when she grows up, and I’m finally dreaming that she might grow up! She’s giggling about funny grandma names that her grandkids might call her someday, and I’m believing that she might actually get to be a Mamie or Mawmaw…or at least the aunt who babysits Audrey’s baby (date night already scheduled by big sister).
Today I’m rejoicing in all the hard days that we never wanted because all along we’ve always wanted Annie. All along we’ve agreed that our lives and our children’s lives are for God to be glorified in all things. And we continue to be amazed at how big and intimate God can show off in a life-loving little girl who fully understands the joy of every day she gets.
“And I will lead the blind in a way that they do not know, in paths they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them.” -Isaiah 42:16