Monday, February 2, 2015

Day 2 - Hazel Roy


Today’s the day. This is the day we’ve been talking about, praying over, looking forward to, and yet agonizing about all at the same time. Today is day our sweet Hazel will undergo her first of many open heart surgeries since she joined our family in the United States last September. I’m going to admit it - I’m scared and perhaps even terrified. But as I sit and wait, I can’t help but stop and think about how this tiny little person who has such a broken heart has come into my life to fix my perfectly “normal” heart. 

Like many others, my husband, Jared, and I felt God calling us to adopt. We’d been saying this for years, but we began to feel we could no longer ignore what God continued to put on our hearts. We knew what God was asking…or so we thought. We filled out all the required paperwork for a young child with minor correctable needs. We poured over that awful checklist of special needs and marked ones that were appropriate for our busy family of six.  A child with a heart condition was not one we marked.


Last April, a friend sent me a message to look at the waiting children page with our agency. There was a girl, almost 2 years old, with corrected Teratology of Fallot (TOF). We fell instantly in love with her, and knew this sweet being was our daughter. It’s crazy to explain. We just knew. She was captivating. We requested her file and learned her heart condition was more in-depth than just a repaired TOF. She also has pulmonary atresia, but from the information we had at the time, it looked like it would be correctable in the U.S. Anticipating that possibility, we proceeded with the paperwork, submitted our letter of intent, and couldn't have been more excited. 


Early last June, we got an unexpected update from the healing home in China that was caring for our heart baby. At that time, we were unaware she wasn’t living in the orphanage in her home province. It was all very confusing. Our daughter was living hours away from her birth home in a special home for critically ill heart children in Beijing. The update stated she’d recently had a heart catheter and been hospitalized for some time. Her long-term prognosis was poor and she was considered inoperable. My heart sank. We knew she would need surgery once she got home, but we were unprepared for the word “inoperable.”  Soon after these updates, we received calls from the social worker and agency asking if we still intended to proceed with the adoption or if we wanted to retract our letter of intent. We knew, without a doubt, this is our daughter and she was going to come home with us.

Jared and I left for China last September completely unsure of what to expect when we met Hazel. The only things we knew for sure was, at 26 months old, she was incredibly small for her age and weighed just 16 pounds, and that she was unable to walk, but had recently learned to crawl.  Her oxygen saturation was in the 70’s and had periods of severe cyanosis.  We were expecting the worst, but were delighted to discover what we got! We arrived and met a fiery, feisty 2 year old with definite opinion she was sure to share! It was comical and exhausting at the same time. Our travel group should win an award for patience for all the bus rides and meals our daughter screamed through! We arrived home and settled in with our family, and almost forgot how sick Hazel really is.


The following week we started having our doctor appointments. That was when we remembered. Hearing “It’s amazing how well she is doing for being in heart failure, or, during the echo, a tech blurting out, “You’re kidding me! Someone go get the doctor now! and having medical professionals ask if you’re wanting to try to correct the multiple defects or are you thinking more comfort cares, it hit us. Hazel is THAT patient. She’s the patient all the doctors at the office know about. She’s the one all the residents want to be in the exam room to listen to because, “You will never see this again. She’s the one the doctor calls after office hours just to check on. We’re now a part of THAT club.  As a nurse, (and having watched multiple seasons of “Grey’s Anatomy”), we know enough to know you don’t want to be a part of that club.

  

Hazel’s correct diagnosis is double outlet right ventricle with pulmonary atresia. She has no connecting pulmonary artery or lung function on her left side. A large aneurysm sits in her left ventricle as well as her right lung. She has a cervical aorta, ASD and VSD. She’s also suspected to have Digeorge syndrome due to her missing thymus, a heart defect, and failure to thrive. While we’re in California, we’ll receive a definitive answer.

More than anything, I wish Hazel’s story was about how fabulous Western medicine is and that her body will be restored. Better yet, I wish her story was about how God has chosen to heal her. One or both of these may turn out to be the case, but for today, her story is about the unknown. The surgery today is to fix her aneurysm as well as stent both her right and left pulmonary arteries. We are hoping for growth of these vessels and greater oxygenation of the lungs. Then we will wait six months and reevaluate the next steps. There may never be a full correction, and we are aware of the risks of this surgery, but those risks outweigh the risks of being left untreated. We’ve traveled across the country, left our four other children home, taken leaves from our jobs…for the unknown. I know it sounds crazy. People have even told us we are crazy, and a year ago, I’d have agreed with them.


What I can tell you is this tiny little girl has changed my life in a way I never expected. I’ve cried buckets for Hazel that started long before she was ever in my arms. Her story breaks my heart. The nights as she cries in her sleep, trying to get her to eat tiny bites of food, the fear of losing her. For the first time, I understand what it means to recklessly love someone. 

I found a definition of reckless love and it states: Abandoning all preconceived or know notions and just loving; loving despite difficult personalities and sin, acknowledging that you are not always acting within the guidelines of ‘safe’; loving without the fear of being hurt; continuing to love despite not being loved or appreciated in return; loving to a point that you act without the side effects even crossing your mind. 

Isn't that a beautiful description of the relationships we have with our kids? Isn’t this how Jesus loves us? Isn't this how he asks us to love His children? I get it! For the first time in my life I finally get it! I get what it means to love with reckless abandon. To love a child who kicks and screams and bites. To console a broken heart in the middle of the night, even though we aren’t the ones she’s crying for. Even though we are trying to give her a family, she’s scared and angry. We’ve taken her away from all she ever knew - a life in an orphanage. We brought home a child the world had written off as too broken to fix, knowing they might be right, but praying they are wrong.


I won’t lie to you. This has been hard. It’s been messy. Nothing about this journey has been what I expected, and we have no idea how our story will end. But I can tell you it’s been amazing. It’s been beautiful. It’s been more than I ever expected or dreamed it could be. It has changed me for the better, and I refuse to look at the world the same again. It took a tiny orphaned baby with the most broken of hearts to change my “normal” heart, and because of her, my life is changed. I am forever grateful.








5 comments:

PB & Ace said...

Praying for Hazel and a smooth surgery and recovery. She is so beautiful! ~Allie

Andrea O. said...

Thank you for sharing, Monica! We will keep you all in our prayers!

LisaE. said...

Hazel is so adorable. Praying surgery goes well.

Jan J. said...

She is a darling. I will be praying for her that the surgery will correct what it needs to and that she can live a long and healthy life.

Kristin said...

I am praying for Hazel's surgery and so glad that you decided to jump into parenting another child with Reckless Love. I followed this link from the LWB link - I have also adopted from China (twice). I've got 7 children now and know the fear of major surgeries. I remember what is is like to see my child turning blue. I remember trying to find a spot on a little body that wasn't covered in needles or monitors. This is a tough journey you are going on, but I am so incredibly happy that you get to be the lucky one to love this little girl. Congratulations on your sweet baby.

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