The Day I Felt Bad For Choosing Life

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.

IMG_3931

-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.

20140615-111118-40278158.jpg

-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.

IMG_5213

-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.

img_6071

-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!

20117136_10211466282111290_4260556947857269675_o

-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.

img_1867

-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.

IMG_3422

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

 

Advertisements

It’ll Never Happen to Me

I slipped soundlessly off the edge of the hospital bed, careful not to wake Annie. It was still early. And we needed her to sleep peacefully through every possible minute of her no food allowed morning. In about an hour, the team would come to take her back for her cardiac cath procedure.

IMG_0093

I needed to shower and think before I got up the courage to hand her over. I robotically went through my routine. Mindlessly brushing my teeth in the tiny sterile hospital bathroom mirror, I caught a glimpse of myself.

I gasped and dropped my toothbrush into the sink. I saw someone in the mirror I wasn’t expecting to see. Glasses still perched, wet hair hanging. I saw me.

I wasn’t seeing the reflection of a internet heart mom friend. I wasn’t encouraging someone else who was about to hand her baby over. I was looking right at me.

You think by now I’d understand that all of this isn’t happening to someone else. Some other family. You think by now I’d be way past believing it’ll never be us. Never be our child. You think by now I’d know it’s me. Accept that it’s my life. But it’s not all that easy to swallow right now.

IMG_3392 (1)

If this is really me–and the reflection in the foggy glass proved it is–then it’s my daughter about to undergo another life-threatening procedure. Then it’s my daughter who has to be held down by me and two nurses just to choke down her regular meds. It’s my daughter who has hospital life PTSD and throws thrashing trauma fits randomly late some nights, unable to be soothed by a caring, but exhausted mother.

Mostly, I don’t want to believe it’s really me because if it’s really me, then it’s really Annie. And it’s hard to admit the test result’s proof that Annie is facing a new complex, incurable diagnosis. Annie has officially been diagnosed with a rare complication of her new heart physiology.

IMG_3341

For the last 12 days, living in Children’s Hospital of Philadelphia, Annie has been medically described each morning as: “Annie, our 3-year-old hypoplast, post Fontan, newly complicated by PLE.” Every morning I want to kick and scream and tell them that can’t be my Annie. Every morning the blood test result readings, the new medicine prescriptions, the 6-8 week plans for waiting on her body to respond all explain my Annie.

We’ve agreed to partner with Annie’s care team in Philadelphia to medically manage her new disease for as long as possible. We all know that the medical management of her Protein Losing Enteropathy (PLE) comes with a loudly ticking clock. We don’t know when the clock stops, but her body will decide. It might tick for a number of years, wound by a new recreated fenestration, stents in her pulmonary arteries, high doses of anticoagulation and diuretic pharmaceutical concoctions. It might tick for a few months, stopped short by high pressures, significant protein loss, and lymphatic fluid overload.

IMG_2340

All in the same moment, when I can’t even catch my breath because of the sadness for my daughter over the grueling amount of pokes, tests, uncertainties, and awful realities she inevitably faces, I catch my face stuck with a wide, bright grin. I’m Annie’s mom!

-Annie, who upon checking into her 6th floor room for an unexpected hospital stay, carefully carved her own name on a princess sticker paper. Then whispered, “Momma, write brave and strong above my name!”

IMG_3346

-Annie who charms the doctors with her old soul and understanding beyond years.

-Annie who has fight and determination.

-Annie whose strong mind convinces her weak body that it’s okay.

-Annie who  coaches herself to stay up all night to avoid sunrise pokes by yelling to her eyes, “No, no, no!” every time they threaten to close in the midnight darkness.

-Annie whose will to live has outwitted every prognosis.

-Annie whose quality of life, vibrancy, and giggle offers hope to new moms wheelchairing around the CVICU hours after delivery.

We’ve been teaching Annie, even more in the last two weeks, how God made her exactly the way He knew she needed to be made. A little easy going. A lot feisty. Not very sensitive. A mind over matter kind of girl. We’ve been teaching her to rely on Him when it feels too scary to take another step. “Fear not, for I am with you,” she’ll quote her Bible verse. We’ve been agreeing with her that she is strong and brave…not on her own, but because God can make her that way.

She admitted that sometimes she feels brave and sometimes she doesn’t want to be brave anymore. She took the words right out of my mouth. Every day now I’m scared to be Annie’s mom. I’m scared that I don’t have what it takes. That I don’t know how to comfort her. That I won’t cut up her 8 bedtime meds right. That I won’t make the best decicions regarding her delicate care. Most days lately I just don’t really want to be brave anymore.

Her bedtime book this week is about Franklin going to the hospital. Dr. Bear reminds him that “Brave is doing what you have to do no matter how scared you feel.” So, no matter how scared I feel, I’m clinging to the truth that I’m teaching Annie. We don’t have to fear. We can be strong and courageous because God is with us. And He’s working for our good.

Tonight I’m especially glad to be Annie’s mom, because Annie and her mom are free after another ICU stay. Every time I walk into the hospital with Annie, I’m never certain I’m going to walk out with her. Tonight, I’m thankful to be the mom walking out with my child.

IMG_3494.JPG

We have so many complicated and confusing and complex days behind us and up ahead. I’m thankful that because of those, both Annie and her mom understand the gift of every ordinary moment.