“We believe your baby has something called Achondroplasia.”
“Achondro what?” my husband asked.
I was six months pregnant at the time with our second child.
Achondroplasia – it’s a word that changed our lives forever. I knew what that word was.
It was a word that meant my son wouldn’t be the captain of the football team or a firefighter. (You know, all of the things we believe our sons will grow up to be when we dream about their lives.)
It was a word that my brain set on repeat for almost two full years to the point of absolute exhaustion.
It was a word that worried me.
It was a word that no one knew.
It was a word that as a new mother to a disabled child completely isolated me from even those closest to me.
It’s was 8:06 am on September 11, 2012 when Michael was born, leaving the only place I could keep him protected from the physical and emotional pain of being born different.
In a matter of seconds, the superficial world of white picket fences was shattered. I was shattered. All of the ugly in me that had hoped for a perfect child was shattered. All of those feelings that made his life about me and my wants for him were shattered.
This was not about me. This was about me becoming the mom he needed me to be in order for him to become the person he was supposed to be.
By medical definition achondroplasia means “without cartilage formation.” It’s the most common form of dwarfism or short-stature. We learned quite a bit about genetics those first few months after Michael’s birth. Most importantly, we learned that children in many other countries are abandoned and sent to orphanages because of the social stigma surrounding achondroplasia or inability to care for a child who needs the medical care associated with this special need.
During one of our early visits with one of Michael’s doctors, she shared with us that she knew of a family who recently relinquished their child for adoption. In their culture this diagnosis was too much for them to socially/emotionally handle.
My jaw hit the floor. I was sitting here with my beautiful baby and I just couldn’t understand why. I piped up, “If they are looking for parents for the child please tell them that we will take him!” My husband nodded his head in agreement. She said, “He’s actually already been adopted, and he’s doing great!” She went on to explain to us that there are many kids living in orphanages in other countries with achondroplasia.
Mark and I knew we were weren’t done building our family and that day God has placed a seed in hearts that wouldn’t start blooming until three more years.
For the next few years we focused on Michael and learning more about Achondroplasia. We joined the Little People of America (LPA) and started to build a new life together as a family that included a disability.
We learned all kinds of fancy medical terms that made us feel super smart and totally clueless at the same time.
Some time around the summer of 2015, we felt a breath of fresh air when Michael had been given a pretty clean bill of overall health. We both felt God stirring something in our hearts, and we decided it was time to add to our family. We contacted a local adoption agency to help us get started. We had lots of decisions to make.
We took a few weeks to mull over our meeting with the adoption agency to make some big decisions for our family. The biggest decision was deciding where we would adopt from. It didn’t seem like it mattered to my husband but something deep in me was telling me our child was in China.
It was a Thursday night in late August when we finally called the agency and told them that we were going to commit to the China program.
The very next morning, a Friday, Mark was working from home and he decided to let me sleep in a little bit. I woke up around 9 am and headed downstairs for my morning coffee. In fact, I had a text from my hubby telling me the coffee was brewing. That always makes me hop out of bed a bit faster. As I headed down the stairs, my husband told me to sit down at the computer and touch the mouse pad.
I was a bit annoyed with him.
I wasn’t in the mood for YouTube videos or a Facebook post.
I wanted my coffee!
“Just sit and move the mouse pad,” he said.
As I sat down to move the mouse pad, I could feel deep in my bones that something was up. I hesitated to think we could already have a child that was a match for our family. I moved the mouse and there, on the screen, was the most precious baby boy. I could tell right away he had Achondroplasia (although he was not diagnosed) by his chubby little trident hands. It’s a tell-tale sign.
“Is he ours??” I yelled out.
“If we say yes, he’s ours.”
“How in the world did that happen overnight??”
“Well, the head of the China program happened to just come home from a partnership orphanage and she by chance met this little boy whom she suspects has dwarfism.”
She was right. Our little Isaiah did in fact have achondroplasia. And, in September of 2016, we were blessed to bring him home from China.
Our story of adoption and achondroplasia doesn’t end there, though. While we were in the trenches of transition with Isaiah, at around eight months home, in February of 2017, I saw a face.
A face that my heart immediately dropped at the sight of.
It was a little girl.
I’ll never forget her advocacy picture. It wasn’t like Isaiah’s. It was sad. It was hopeless. It was a picture that made me scared to say yes because her very face convinced me that there was no hope. And I believed her.
But I mustered up every ounce of hope for her and showed her to my husband. His immediate response was, “Let’s go get her.” I thought to myself, “Hey hubby, look around. I’m like that stressed out mother who lives in a shoe right now.” I said to him, “I don’t think I am capable of bringing her home. We are still trying to bond with Isaiah and his transition hasn’t been easy. Let’s pray for her though. Let’s pray for her family.”
That night I thought about her for hours. I felt agony at my “no”.
Months went by and I continued to pray for her family until early June, four months from when I first saw her. Her hopeless face was in my newsfeed again. I called my husband at work crying. I felt out of my body. I knew I was going to say yes to her.
My husband told me to call our agency immediately and ask them if they could find her file and more information on her. The very next day we submitted for PA. It was the biggest whirlwind of my life. She was failing to thrive, and we needed to get to her fast.
Four months later, after being granted a medial expedite by both the US and China, my husband boarded an airplane to bring his girl home.
It was hard for me to stay home, but Isaiah was just home a year and things were going really well. I felt it was prudent for me not to rock the boat, since we were rocking the boat already by bringing our new daughter home.
Achondroplasia changed me. A word that took away all hope for my son had now given two children an immeasurable amount of hope.
It gave me hope.
A word that took so much away from me now gave me more than I could’ve asked God for. I was a very shallow thinker. God knew I needed to give birth to Michael in order for me be open to bringing my children home from China. I still struggle with that ugly part of the story, but there is so much beauty that outweighs the ugly.
Achondroplasia was the tie that bound our family, and we couldn’t be prouder of our kids, including their dwarfism.
– guest post by Melissa