The Club I Never Wanted to Join

March 1, 2018 advanced heart failure, complex heart defect, Family Stories, February 2018 Feature - Heart, Heart System, terminal diagnosis 2 Comments

I’d been part of the adoption community for over 10 years and the heart moms always seemed so special to me. They were so brave and so strong, way stronger than I could ever be; moms who were willing to take this giant leap out onto the ledge of life and death for their children. They traveled the world so that they could take the risk of falling in love with their child, only to bring them home and watch them fight for their lives.

It scared me, that reckless willingness to love someone who was so sick. To give it all away, every last piece of your heart, only to have it ripped from you at any minute wasn’t an option for me. I could never be in that club.

How in the world did those women choose that?

I remember the day my social worker asked us, “Why don’t you take a minor needs girl like a heart baby? You can get a girl with a minor defect. They can fix it here.” I remember my husband talking but I couldn’t hear what he was saying. I had one of those instantly silent moments and my mind froze. It felt like it was a connection to something really heavy, and important. I managed to look from my husband to her and say, “I don’t think I can handle that, with my luck I’d end up with a child that couldn’t be fixed. I couldn’t have a child that was sick and then lose them. I wouldn’t survive.” I knew the moms who brought home heart warriors and I knew how hard it was when the heart defects were serious.

A week later, I saw the photo of the girl who would become my daughter, Hosanna, on an advocacy post. I was just transfixed on that little girl. Her special need was listed as post op CHD. I kept going back to her picture over and over and I just could not take my eyes off of her. We asked our agency for her file and fell in love.

A file review by a surgeon explained that she had a shunt placed to support her heart defect, and that she had recovered well. We were told that she would likely require a follow up surgery and possibly correct an issue involving her valve. Her condition was stable, and we could expect her repairs to have a good outcome. We trusted that review, called our social worker to add heart defects to our list of acceptable needs and submitted our intent to adopt her that same day.

Later, we would learn that the review had not come from an experienced pediatric cardiologist – the file contained signs of a much more serious deformity.

When we were at the end of our adoption process, we received an e-mail from our placing agency. They had been notified that she was not doing well and asked that we get her as soon as possible. The CWI was afraid she was failing. How could she be failing? Her surgery was done, why wasn’t she stable? Why was she failing?

We got a second opinion before we travelled and had her file reviewed again by a pediatric heart specialist. His answer was that she had likely outgrown the shunt and needed a valve sew over and possible surgery to correct a defect in the heart chamber.

We first saw our girl when we stepped off the elevator at the civil affairs office in Hunan. She was sitting on a wooden bench with her nanny and she was staring, terrified, straight ahead. She was so overheated, sweaty and blue. She barely held her head up and the tears sat at the edge of her eyelids, but she didn’t dare let them fall.

We were told later that they had told her not to misbehave, not to cry. They said to be good and not to make any noise because she needed Mama to come and save her so that she didn’t die. The nanny sat next to her and whispered to her the entire time that we were in the room, as she stared straight ahead, terrified. The entire adoption took less than an hour. We learned after we signed the paperwork that they had waived the 24 hours harmonious period. Our guide told us on the way out it was because they said we’d change our mind since she was dying. We wouldn’t have.

I couldn’t wait to get back to our hotel room to check her pulse ox. I knew that there were heart moms in Guangzhou who were stuck there and couldn’t get on a plane home because their child’s pulse ox was in the 70s. I clipped it on her finger and whispered, “not 70s, not 70s, not 70s”. It was 38. It was also the start of what would become the most desperate journey of my life. I was terrified and flailing, and everything but brave. We fought hard to get her out of China, and she fought hard to stay alive.

Once our flight landed in the United States, we drove straight to the hospital. And thought that we had done it. We had won, the fight was over and we were victorious. We admitted through the ER and she was sent straight to the CICU. My 9 weeks there weren’t brave, they were desperate. She clung to life through refeeding and her organs stopped working. She endured blood draws from collapsing veins and suffered through painful procedures. She coded, and machines sustained her. She laid out with her body cut open for days, totally aware of what was going on around her, while I sat and watched her heart beat and bleed through the plastic sewn across her chest.

She fought and I failed.
She bled and I broke down.
She was courageous, and I was cowardly.

I was blindly moving forward and buried in faith. I stood on the ledge and held onto her with everything that I had, and it wasn’t anywhere nearly as much as she needed or deserved.

The rooms and halls on the cardiac floor are filled with moms. There’s a war-torn history shared in our souls that we can see on each other’s face. When other people see us, we look brave. We know we’re breaking. We look strong but we know that we’re scared.

There is no place else that we’d be, but none of them want to be here. Our membership in the heart mom’s club comes with the deepest, most primal grasp on the lives of our children. There is nothing that could peel them from our grip or pull us back from them. We have an appreciation for every single moment that they have, and see the miracle in every single breath that they take. The colors are bolder, the lights are brighter and the love is bigger on the ledge.

This mama who was supposed to fix it put that sweet baby through so much, always with the idea that the end result would be that she was fixed. We found out about a week after we were discharged from the hospital that Hosanna’s surgery was palliative. The doctors used that heroic broken heart that she was born with to create a heart that will buy her more time. She is still in heart failure and this heart can’t be fixed.

Her reports were only as good as the technology and resources in China could provide. They had no way to show the more than a dozen different and severe heart defects that my daughter was born with. I thank God for that. I wasn’t brave enough to be the mother that she deserved to travel the world for her, knowing that I’d be bringing her home to fight for her life.

I was the mom who was privileged enough to join the club that I never wanted to be in.

I didn’t knowingly take the risk that Hosanna deserved because I thought kids like her needed one of those strong and brave heart moms. Now I know that heart moms really aren’t any stronger or braver than anyone else.

We take our warriors to doctor visits and give them their medicine.
We hold their hands, and we hold our breath waiting for test results.
We fall apart after they get wheeled away from us into operating rooms.
Sometimes we see them have to endure so much that we break inside but we just smile at them and sing.
We spend hours and days and weeks next to hospital beds.
We count as their chests rise and fall while they sleep.
We check to make sure they’re still breathing.
We cry alone when we’re scared and we cry together when we’re weak.
We fight for our kids.

We’re there to fight for each other, too. We win together and we lose together. We mourn those kids who are left behind, who won’t get the chance to come home and make their moms look brave. We see how amazing, strong and worthy our children are. We are desperate for them to hold onto life and we will do anything to keep them here. We know how blessed we are that they are ours.

We know that they are the brave ones.

Getting to be the mother of a warrior is a gift. The life that is lived on that ledge is the most extraordinary, fullest life that you’ll ever get to live when you take that leap. Loving them is the easy part.

There is nothing in the world that you could give me to let go and step back onto solid ground.

– guest post by Jennie

2 responses to “The Club I Never Wanted to Join”

  1. Kristine says:

    Oh, Mama!! I prayed so hard for you, for Hosanna, through all of that. Reading all of it brought the tears back to my eyes. I’m so grateful to be a part of your circle, to have been privileged enough to be front row for the miracle that is your girl. In my eyes, you are beyond strong. You still, always, have my prayers. Love to you!

  2. Joanne Greco says:

    I was just thinking about you yesterday and allvthat you two went through. You are brave, braver than most, braver than me and im a war veteran. We never know how strong we are until being strong is our only choice. We are not super human. We break down, we cry out to God, we feel like we just can’t take any more, but we do. We also have a God who will carry our burdens if we just give them to him. He hears out prayers. You are brave and Hosannah is blessed to have you as her mother. Much respect for you.

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