I remember sitting there staring. Staring at the notes that I had just scribbled down.
My mind was racing and yet it was paralyzed. I had just gotten off the phone with the cardiologist who reviewed the file of a girl that my husband, Dan, and I had requested him to review.
I was expecting to hear how her heart functioned and its anatomy, and maybe even possibly get some feedback on his thoughts on future cardiac needs. He gave me all that. And then he gave me a bit more.
My eyes focused in on the words I had underlined, DeGeorge – 22q deletion syndrome. The doctor explained that patients with this heart condition (tetralogy of Fallot) have a higher chance of having the genetic syndrome: 22q11.2 deletion syndrome. I had never heard of it until that day.
He told me that this syndrome has a wide spectrum of effects. He listed a few physical: heart, kidney, cleft palate. And then he listed a few developmental issues: speech delay, behavior issues and learning disabilities. He said that if she were his patient, he would order genetic testing first thing.
I couldn’t get past the words learning disabilities. We didn’t check off cognitive delays or learning disabilities on our medical conditions list. Medical needs were something that we knew could take on, but speech delayed? Learning disabilities? And possible other cognitive unknowns?
We did a lot soul searching. And praying. And talking over the next couple of days. And then we prayed and talked some more. In addition to all that praying and talking, I cried. I had been looking at this little gal’s face for three months on our agency’s waiting child page. I had already claimed her as mine.
And now? Was I really saying “no” to moving forward to making her our daughter?
We told our agency we needed more time. And when it was time, we returned her file and told them we would not be moving forward with her.
When I told my parents that we had returned her file, my dad said something that was life changing, ”I respect your decision. I really do, but please don’t let fear dictate your decisions.”
Fear. I just about let it cost me one of the biggest joys of my life. We prayed that God would make it clear that we were to move forward with her. And He did. We called back our agency and told them that we had decided to move forward with her if her file was still available.
Over the next year while waiting and paper chasing, I read all that I could about 22q. We were incredibly blessed that Reagan was at New Day Foster Home in Beijing so I would get to see pictures of her almost daily. I would literally sit and analyze each photo, looking for facial characteristics that are common with the syndrome. I’d analyze each carefully worded word on her updates.
I’d like to say that when we landed in China I was ready for whatever was to come but not so.
Just because God made it clear we were to bring Reagan home didn’t mean there wasn’t any fear.
The minute I met Reagan, I knew she had 22q. I just knew. And so did Dan. I remember sitting in our hotel room in China watching her play with a puzzle. Dan leaned over and whispered to me, “I’m scared.” I whispered back, “Me too.” And then as if she knew we were talking about her and wanted us to know it was all going to be okay, Reagan looked at up us and held up a yellow piece of the puzzle and said, “Lellow.”
Once home and settled, we met with a geneticist and moved forward with testing for Reagan. On September 14, 2011 (one year to the day that we sent our pre-approval letter to our agency requesting Reagan to be ours) we got the call from the geneticist that she did indeed have 22q.11 deletion syndrome.
The fear crept back in as I listened to the doctor walk me through the road of specialists that needed to be seen.
It has been quite the road traveled since that diagnosis day. 22q effects Reagan in several ways; she was and is speech delayed. She came home almost non-verbal but today is a very chatty 12 year old. She also came home with severe hearing loss in both ears that has been corrected with surgery and hearing aides.
A few years after the genetic testing, Reagan was diagnosed as intellectually disabled. That diagnosis brought the biggest fear and, if I’m honest, some sadness and denial. I didn’t share the diagnosis with her school for almost a year and when I did, I couldn’t speak. I literally couldn’t get a word out. I cried during entire the meeting and just handed her teacher the paperwork and pointed to the words “intellectually disabled”.
Dan and I learned and are still learning about the IEP process. We’ve learned and are still learning how to be an advocate for Reagan both in and out of the classroom. We’ve been lucky to have a very supportive educational team surround us and her.
Reagan started middle school this year and her teachers report that she is a very determined student who will often tell them she doesn’t want any accommodations on assignments or tests because she feels it’s cheating.
I look back at our early years with Reagan and I remember how overwhelmed I felt about raising her. If I could tell my younger self one thing about parenting a child with learning disabilities, it would be this: “Hey you, just do today.”
Early on I future tripped rather than just taking it day by day. Progress for Reagan has been slow. I’ve learned to be patient. I’ve learned how much joy and celebration there is in the small baby steps of progress.
Reagan’s 22q diagnosis brought big fear, but Reagan brings even bigger JOY. She is a bright light, happy and smiley, a world class hugger and everything good. She has brought our family a joy that we never knew was missing.
Fast forward to 2015. Dan and I felt the stirring to adopt again. As we discussed what medical conditions we would consider, we shared with one another that what we really wanted was another Reagan. We wanted to bring home another child with 22q.
We weren’t sure how we would even find one. It isn’t something that is commonly tested for in China or is on a medical conditions list, but we moved ahead praying for God to find us a little one with that unique genetic make up. Yes, we really did pray for another child with the very same syndrome that scared us just a few years ago.
In January 2016 a boy on our agency’s waiting child list caught our eyes. He caught my eye because quite frankly, I thought he was one of the cutest little boys I had ever seen.
We requested to see his file not only because we thought he was adorable but his special need was a congenital heart defect. When we received his file, the first thing I looked for was to see what heart condition he had. I was scrolling as fast as I could to find it when, there it was, tetralogy of Fallot. I knew that diagnosis alone didn’t mean he had 22q but I knew that he had a higher chance of having it.
I then looked the pictures in his file and I could see it. I saw those facial characteristics so common with 22q. His medical history was almost identical to Reagan’s: heart surgery, chronic illnesses, chronic ear infections and so on. I couldn’t believe that we had actually found a little one with the syndrome we had been praying so hard to find.
On February 6, 2017, I became mama to that precious little boy, Sonny.
Imagine my surprise when his doctor called with the results of the genetic testing and happily announced, “The testing came back and Sonny does NOT have 22q deletion syndrome.” I hung up the phone strangely disappointed. I texted a friend that Sonny didn’t have it and I’ll never forget her kind words. It was the response only a true friend who knew my heart’s desire could give, she asked, “You okay?”
I had to laugh at myself, I was disappointed that Sonny didn’t have it and just years ago I cried because Reagan did have it.
In less than 48 hours, the doctor called back with some news. I could hear over the phone that she was a bit flustered and tongue tied. She apologized profusely. The lab had sent back incomplete results, she then shared some information that I already knew, ”It has been confirmed that Sonny indeed have have 22q deletion syndrome.”
God is good.
Sonny has been home a little over 18 months. We say that if Reagan is our light, Sonny is our sun. He radiates joy and happiness. He is a happy little boy who truly believes everyone is his friend. And, luckily for him, everyone wants to be his friend. We are still learning and waiting to see how this syndrome will affect him. So far the impact doesn’t appear as severe Reagan’s.
As of today he’s in speech therapy. We see hints that there may be some future learning difficulties that may need to be addressed and we’ll take that on when we are supposed to take it on.
Reagan and Sonny’s uniqueness is not because of their 22q diagnosis… there’s most likely millions out there living with the same diagnosis. What makes them special is their laughter, determination, perseverance, scrunchy faced smiles, bravery, and most of all, their full-hearted unconditional love for me.
I am forever and beyond grateful for being their mother.
For more information about 22q.11 deletion syndrome:
22q Family Foundation
Children’s Hospital of Philadelphia