December 18, 2008 Family Stories, spina bifida 0 Comments

By Jane, mom to Madeline Jane Xia from China with spina bifida

Not long after my husband, Erik, and I met he told me with great affirmation that he wanted to adopt a little girl from China. I remember thinking that any man who knew that from early on in his life was quite frankly the perfect man for me. Two years after we got married we were blessed with our biological son, Connor. We thanked our lucky stars his arrival on earth was so uneventful and we settled into life with a little boy. Soon after Connor turned one, I knew that our family needed to grow. When I approached my husband about having another baby his answer was simple “I want to adopt a little girl from China.” So, we started the process in January 2006, full of anticipation and joy. During our paperchase a nagging feeling of “something is missing” would often come across my mind, but I dismissed it, attributing it to nerves. As I started to join in on adoptive parenting websites and online groups I started to read about the waiting child program in Chinese adoptions. It was not too long after that when I finally realized what the missing piece was: not only was our daughter in China, but we were meant to adopt a child with a special need. My sweet husband, of course, agreed.

In December of 2006 we asked to be put on our agency’s waiting child list and we knew that our daughter would find us there. It felt so right. We got our first call in April 2007 about the most recent list our agency had, but there were only boys available. My husband quickly told our agency’s representative that he had a daughter in China. The second call was in June of 2007, our agency thought they might have a little girl for us. We both looked at the paperwork and the picture of that sweet girl, but after much prayer and a lot of discussions with doctors we agreed that this little girl was not ours, it just didn’t feel right. With heavy hearts we asked our agency to find her another family. After the second call, we worried we had made the wrong choice. We decided that maybe for us the 3rd time would be a charm and if it wasn’t we’d reevaluate where we were at that time.

Much to our surprise on July 31st, 2007 I got a call on my cell phone from our agency’s special needs coordinator. She thought she might have a little girl for us. I was so nervous as I called Erik to tell him about this little girl she had told me about because her special need was not one we’d ever discussed. Xia Jie had spina bifida. Again, as always, Erik used his positive attitude towards life and said “oh let’s look at her paperwork, I bet this is it!” So, I called our agency back and asked for the file. Our special needs coordinator asked if we wanted to see her picture and I quickly said YES! Erik and I opened the emails at the same time while chatting on instant messenger, it was at that moment that I knew, staring at that sweet face, our daughter had found us.

We waited another 5 months until we could bring her home and it was the longest 5 months of our lives. However, God has his plans and as things worked out, we were given the gift our our daughter on her Daddy’s birthday, January 13th, 2008. The man who knew from a young age that his daughter was in China got the best gift ever.

Our initial impressions of Madeline’s spina bifida were that she was a medical miracle. She was completely potty trained at age 2 1/2 (before she even came home!) which is almost unheard of in children with Spina Bifida. She had pretty good stability, but it was obvious she had a lot of trunk weaknesses and leg weaknesses. She had a 3cm mass on her back that was round, dark and looked like a huge dimple. Soon after we got home, settled into life and started adjusting, we brought her to a neurosurgeon who confirmed my first thoughts after seeing her mass. Madeline has Spina Biffida Occulta and Tethered Cord Syndrome. We had her cord released in April 2008, she was tethered in 2 places. The 4 days in the hospital were long, exhausting and completely overwhelming. We worried so much on her last day in the hospital because Maddie refused to sit up, even after she was allowed to sit up and walk. We found out later that day that she and Connor were true siblings because it was our 4 year old son who convinced his sister that it was OK to walk again. She needed a few months of physical therapy, but because she is a wonder child, she was even released from that sooner than expected.

It is now almost a year later and she continues to WOW us everyday. She’s smart, witty and funny. She is full of love and she loves her family, from her cousins to her uncles and grandparents. No one ever believes us when we tell them she has a special need. We smile and say “we know, it’s because she’s perfect for us.”

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