Still Standing

In October of 2013, we took Alexandra on what we call her “Ivy League” tour, having a liver transplant evaluation at Yale in Connecticut and receiving a second cardiothoracic opinion on her by Harvard, or Boston Children’s. We then in April of 2014 did a combined heart/liver transplant evaluation at Boston Children’s, and in October of 2014 did a combined evaluation at Stanford Lucille Packard – all three ended in denials. This is the story of why we are still standing.

I remember the look on Dr. Miloh’s face implicitly. His lips were drawn, pursed almost. He looked like someone had stabbed him in the heart right in front of us. “She needs a liver transplant, the only way to help her is to get her a new liver.” My heart sank. I always thought maybe she’d need a heart one day, but never did I think another organ. I also didn’t think that any of this would have taken us on the journey we have been on. Never in my wildest dreams (or nightmares) could I have imagined the lengths we have gone to in search of an answer. In search of someone, anyone who would help her.
  

I seem to have all these memories of doctors faces over the years. Like frozen moments in time. The face I like to call her local cardiologists “oh s**t face”; Dr. Miloh’s face every time her ammonia was over 100; the look on Dr. Hellenbrand’s face (the chief of cardiology at Yale) when he told me there was no way she could have a stand-alone liver transplant; the look on her Boston cardiologists face when he had to tell us her heart wasn’t in the same shape we were being told it was at home. I will live with these doctors' faces etched in my memory forever.

I remember the last denial for transplant clearly. Dr. Kaufmann called me and discussed why Alexandra would not be a candidate for transplant. I didn’t say much other than “Okay, I understand.” What can you say? “She’s only got 1 SVC; her body is just not compatible with a four chambered heart.” What else could I say?

Three no’s from the most prestigious centers who see the most complex kids in the country, and the world. No one will touch her.

I felt raw. Alone. I had a breakdown. I alienated people who I felt were some of my closest friends because I couldn’t figure out why. I couldn’t figure out where to go or what to do. I fell apart.

Three no’s. I essentially spent the rest of 2014 and the first part of 2015 in a rage. I was so angry. The world, the entire world was against me and my child. I was lost in a storm of tears, and heartbroken from the fact that there would be no saving my first born gal.

But let me tell you where we are today – we are good. We are great. We are learning to live in the reality of this life. We are truly living.  No one will give her a transplant, and that’s okay. She told me herself that if I forced the transplant on her she would die. I think our kiddos know so much more then we think they do.

I’m going to bury my daughter. I say it all the time. People look at me like I’m crazy. I think it’s the least crazy thing I have ever said. I laugh wholeheartedly, and I wear everything out for the world to see. Yes, someday I will stand above her grave and my arms will be empty from the loss. But that day is not today.

What we have now is true freedom. I live in reality. I bet you’re thinking I’ve given up hope, but I am far from it. I have so much hope. Because I put the power and control into places that they needed to be in. I learned to be vulnerable, and not to be afraid of the pain or the craziness inside. We’ve been given a life. A life full of pain and heartbreak. Filled with open heart surgeries, and drugs, and therapies, and tons of crap to fill up every single day with no minute to spare. But it’s glorious. It’s messy. I’m messy – she is messy, and beautiful.

It’s a life. And even with three no’s to transplant, a left lung that’s just doing nothing but recycling unoxygenated blood, and worsening scoliosis – we live.  We live because it’s what we have to do. Yes, it took me to have a breakdown, to feel like I was coming apart at the seams (and sometimes I still feel that way), to question every move I’ve made since the day she was born – but I realized that this was our life. It isn’t going to be pretty, not everyone is going to want to be my friend, and sometimes I’m going to look horrendous – but it will be glorious.

Live gloriously. Live vulnerably. Just live. And if that fear of standing over your child’s grave hits you from time to time, remember today. Remember what’s right in front of you.

Remember and live gloriously. 

Danielle Edges (Mom to heterotaxy hero, Alexandra)