Newly home from China, we were settling in as a family of five. So when we realized we were going back to China for child number four, we felt quite surprised. A fellow adoptive mom uses the hilariously appropriate term “unprotected paperwork.”
Uh-huh. We are happily nodding our heads over here in agreement.
It all started when a local friend, who had decided to pursue adoption, asked if I knew any children being advocated for with heart conditions. So, despite the fact that I had vowed to stay away for just a bit as we settled into a tougher season of life with out-of-state surgeries for our daughter Mei, I took a peek on the China advocacy groups.
I was scrolling through when this face appeared.
I couldn’t scroll away. I couldn’t just comment with heart-eyed emojis.
Emotions flooded me.
Nothing about this made sense. And yet, at the same time, it felt like it made perfect sense.
To say the least, we weren’t in the best position to adopt again. We were happily exhausted (you guys know this feeling?) from surgeries and from the adjustment period from our recent adoption. Our funds had been depleted from the adoption to the surgeries and flights. But somewhere, deep down, I had faith (or temporary insanity! Ha!) that could move mountains.
And mountains were moved. Every. Single. One.
After thinking we wouldn’t receive her file, due to circumstances out of our control, we did.
My husband, Clay, is a runner and he is always a little happier after a long run. On one particular summer day, after a longer than usual run, he walked in and caught me off guard. He calmly said with a smile, “I want to be a family who says yes to hard things, because they are the right things. We are going back to China.” I am not for sure what most wives ideas of sexy are, but if this isn’t sexy, I just don’t know what could be. 😉
We submitted our LOI.
We were prepared for a nonverbal child who may not show a great deal of progression. The orphanage was adamant she had no interest in others. Despite knowing better, I did as most moms do, and had a heart full of hope.
Mei’s wonderful surgeon had gently and honestly prepared us for two definite diagnosis after reviewing her file in-person during our time in Baltimore.
Congenital Psuedoarthrosis of the Tibia. Pseudo what?
Neurofibromatosis. Neuro what?
We quickly learned how to pronounce these and their abbreviations, CPT and NF. Mei’s adoption and fibular hemimelia really had us confident we could handle the CPT diagnosis and the unknowns that come with adoption. I feel like she opened the door for Lottie to join our family, as Mei’s brother did for her, and brother’s oldest sister did for him.
Fast forward six months and Lottie was in our arms.
We felt like we had won the “Lottie-ry.”
We were watching a miracle and we knew it. Everyone knew it.
Her speech progressed, her hearing was normal, her growth was incredible, and her NF was not greatly affecting her from what we could determine.
She adored us and we adored her.
The transition was peaceful.
Over time, she started to communicate she wanted more mobility. Some children walk well with CPT and bracing. Lottie wasn’t able to walk more than a couple of painful steps. Her leg would collapse like an accordion making it impossible to give her the bracing she needed. We were able to get her a custom pink wheelchair, which she loved and bought everyone needed time.
We tried to stay patient in scheduling surgery, knowing either route we decided would be emotionally and physically hard. At six years old we were weighing her personality, her past, and her desires with what we thought was best. It became clear to us, staying local and having an amputation was in her best interest.
Just to note: CPT varies, much like Fibular Hemimelia, and the path for each family is different. CPT is a rare condition affecting 1 in 250,000 babies. Psueodarthrosis means “false joint” and children with the weakened and bowed tibia often sustain a break with little to no trauma within the first two years of life, or even before birth. The compromised bones have a very hard time healing. There are a handful of specialist who are experienced with CPT and are often used in cases were union of the bone is desired over amputation. All families understand there is no guarantee with CPT. Again, every family’s path is different and personal.
Making the decision to amputate your child’s leg is a difficult one. We felt as confident as parents can feel, we were moving in the right direction for Lottie. We made sure Lottie had the appropriate preparation and her questions answered. She needed to feel part of it all and given her own time to process.
With the help of a mentor, I accepted the grief we both would feel over the loss of her perfectly formed and beautiful, dainty foot. I’d catch glimpses of her snuggled on the couch with ten wiggly toes peeking out of the blanket and would find myself fighting back tears.
But, like her, I also dreamed of the day she could run and play – without limitations. It was the light at the end of the tunnel for us.
Surgery day came and Lottie was a champ. Truly. We had a “hiccup” with an anesthesiologist and requested a new one. It felt like a big blow on a very emotional morning, but Lottie’s attitude and bravery were contagious (as always), and we were able to shake it off.
Surgery went as planned and she woke up from anesthesia, for a lack of better words, freaking out. We quickly realized it wasn’t due to pain, but the knowledge that she had just undergone the amputation. We pulled back the blanket and showed her the simple “band-aid” (an ace bandage wrap) and how there was no more broken leg. It was all better. Over and over we repeated, “We are so proud of you. The hard part is OVER.” She quickly calmed down, smiled and joined us with a whispering of, “I am so brave. The hard part is over.”
Yes, baby girl. You are so brave. The hard part is over.
Her favorite doll underwent an amputation as a surprise to Lottie. While still in recovery, she delightfully took her doll and held up her new leg and the doll’s new leg and said “cheers.”
I knew right then, we’d all be okay. It was my moment of relief and I believe hers too.
She surprised everyone with how well she did in the hospital and she didn’t shed another tear. The continuous nerve blocks were working great to control her pain. Her happy glow was a shedding of the anxiety she had built up prior to surgery. I kid you not when I say her tonsillectomy was a harder recovery than her below the knee amputation.
Below is a picture of Lottie just five days post-op. She was home, playing and nothing was stopping her.
Nine weeks after her amputation, with her purple prosthetic leg, she was walking pain-free.
The first day home with her new leg was pure excitement as her siblings cheered her on. They are her biggest fans. She immediately took to the trampoline, playground, and her sister’s scooter.
Her doctor and prosthetist recommended taking it slow, however, slow wasn’t in Lottie’s plan. With every step she giggled in delight and hasn’t stopped. Every step is an adventure for her and it’s one of her best qualities.
It’s now been eight months post-amputation and she is on her second prosthesis, this time a colorful leopard design with a different type of suspension for added comfort. Similar to Mei’s limb difference, her orthopedic need doesn’t affect us daily. In fact, it often times brings unexpected humor to life…
I’ll remind my kids to take their shoes to their room, while reminding Lottie to take her leg to her room.
One day at our go-to restaurant, Chick-fil-A, her leg fell off in a very busy dining room making a loud bang against the tile floor. What else do you do, but pick it up, put it back on, and finish those perfect waffle fries. 🙂
At gymnastics class one day, a little girl pointed to Lottie’s leg and said, “Look mom. Her leg looks fake!” The mom probably wanted to die, but Lottie and I both started giggling and I said, “It is fake!” Then Lottie told her, “Look! I can’t wiggle my toes.” We also explained a doctor gave Lottie a special leg so she could walk just like her. 😉
With permission to share, a fellow adoptive mom recently posed the question: “Those of you that have adopted multiple times, when did you feel ready again?” She went on to say how resting some, saving some, vacationing, and settling in would feel nice but, “It’s hard to shut your heart off and hope they find families.”
I instantly related to her post and that torn feeling you feel after adopting. I wrote back and said, “I agree the idea of vacations, resting a bit and just adjusting longer seems nice, but Lottie’s sweet face just seemed even better.”
That’s how we knew.
While this post focuses on Lottie’s orthopedic needs, please reach out to me for any questions regarding adopting out of birth order, adopting older children, delayed development, CPT or Neurofibromatosis. I am happy to chat anytime.
– guest post by Natalie: blog || Facebook || Instagram
Thank you for sharing your family story! Our second daughter from China shares this diagnosis of NF1 and CPT, and she also came home at age 6 1/2 (in 2009). Instead of walking, she hopped everywhere! We sought help through Shriners Hospital where we learned our daughter had something other than an untreated broken leg. It is a blessing to read of your family’s experience with Lottie! Thank you!
Oh we need to connect! We have special babes with such similar stories!
We to have adopted a son with the same condition. Today we celebrated our one year anniversary. Gotcha Day he had his amputation 2 months ago. He is doing fabulous.
Oh I am so glad he is doing so well! We certainly have tough kiddos! Are you in the pseudoarthrosis of the tibia FB group? We should connect! XO