Life is full of things we thought we could never handle… until we have to.

As we considered growing our family via adoption, one thing we thought we “couldn’t handle” was a child with limited mobility. We already had three very active children. We love to hike, bike, go to the beach or spend a day exploring the city. We did not want that to change.

Thankfully, though, we chose to approach adoption with an attitude of complete submission.

We wanted God to write our story, not us.

This meant making our choice of gender, age and special needs as broad as possible. But we still had our ideas of what we thought we could handle. We also asked God to make it abundantly clear who the child was that would complete our family.

Once our dossier was off to China and we were waiting on a match from our agency, it occurred to me that the medical needs we had dealt with the most with our older three children were orthopedic. All three of our children have broken both arms, some of them multiple times. We have also had one broken finger, one broken leg and one broken foot. And, yes, our children drink a lot of milk! We could definitely handle an orthopedic need.

When our agency finally sent us a match, my heart sunk almost immediately. Something about the little girl’s file and medical needs did not seem right for our family. While doing some research online about this little girl, I managed to find the NGO where she was receiving care. As I looked through their website, I saw a little boy who caught my attention. I let our agency know we did not believe the file they had sent us was our child, but we would like to know more about the little boy we had seen.

For about two weeks, we waited while our agency worked to get the file of this little boy. In the meantime, our family reunited with some old friends who had moved away. We shared with them that we were waiting to hear about the possibility of being matched with this little boy. I mentioned the name of the NGO that was caring for him and my friend, Kim, said she had a friend who had just returned from volunteering for a year in China at this particular NGO. She was going to reach out to her and see if she was right.

What were the chances?!?

The next week, we received his file. All of the medical information was over two years old and he was now 4.5 years old. We learned he was born with bilateral club feet and bilateral webbed elbows. From information on the NGO’s website, we learned that his clubfeet were corrected under their care at the age of three and he was now walking.

Around the same time, we also learned from Kim that indeed her friend had worked at the NGO and knew this little boy quite well. We were able to connect with her and learned a lot about him. We learned he was an incredibly smart, determined and friendly child. Nothing about his physical disabilities seemed to slow him down and, if anything, it heightened his ability to focus and learn.

In her words, “You should run to get him!”

That was all we needed to hear.

Once we received LOA, I began to do some more digging into what might be the cause of his being born with two major bilateral orthopedic needs. I googled “born with bilateral club feet and webbed elbows” and began to read about some scary stuff. Even as I read some scary diagnosis, I was reminded that God had used our friend as well as his orthopedic medical needs to make it abundantly clear that he was our child.

Thanks to the NGO providing his care, we were able to get more detailed photos of his hands, feet and other features. And through my online research, I narrowed the cause of his special needs down to a rare genetic disorder called Nail-Patella Syndrome. But only genetic testing once he was home could confirm this.

Nail-Patella Syndrome has two distinct features and many others that can occur. The main two features are missing or malformed fingernails and missing or malformed kneecaps. From photos, I was able to gather that our son had malformed fingernails and missing kneecaps. There were also two other major issues that can develop with this syndrome: one relating to the eyes (glaucoma) and one relating to the kidneys. Again, this all sounded pretty scary, but we moved forward with confidence that this little boy was our son.

On Friday, November 9, 2018, we met our son in person for the first time at the NGO in Beijing. He was so much smaller than we ever could have imagined (also a part of Nail-Patella Syndrome) and so much smarter and braver than we ever could have imagined, too.

We were able to spend two days getting to know him and letting him get used to the idea of us at the NGO before we all traveled to his home province on Sunday for Family Day. On November 12th, Meng Bei became our Henry Bei (still affectionately known as “Bei Bei”).

Our time in China with him was a dream come true. We fell in love with our son and his birth country and look forward to returning someday.

His first six months home have been full of some of the hardest and most beautiful moments for our family. He has attached beautifully to each of us. As usual, Baba is the fun guy who everyone runs to the door to greet when he comes home in the evening. Mommy is a must when comfort and cuddles are needed. Jie Jie (big sister) is a great substitute “mom” when mommy needs a break. Our “middle child” Ge Ge is good for a toss on the couch or a tickle fest. Our youngest Ge Ge is the best big brother we could have ever hoped for. And, our Bei Bei makes us smile just by walking in the room and guarantees we will get a lot of attention wherever we go from now on.

The past six months have also been full of a lot of doctor appointments. We were able to confirm the Nail-Patella Syndrome through genetic testing. We have a team of specialists at Boston Children’s Hospital that includes a geneticist, two orthopedists (one for arms, one for legs), an ophthalmologist and a nephrologist. We also have weekly PT, OT and speech therapy (for feeding). We have begun preparing for school next year with meetings regarding his 504 plan for accommodations due to his medical condition.

As you might remember our thoughts on not being able to handle a child with limited mobility, we are learning to make adjustments. While Bei Bei can walk, he doesn’t go anywhere very quickly. While he can be carried for hiking and ride along on a bike for now, accommodations will be needed in the future. Exploring the city pretty much consists of navigating traffic in and out for doctor appointments right now.

As he grows and ages, the chances of limited mobility go up dramatically due to the lack of knee caps and nothing to stabilize bones, muscles and tendons. Our prayer is with good medical care including lots of PT, he will be able to walk unassisted and without pain for as long as possible. We also pray for stability in his vision and kidney function.

Bei Bei is the most wonderful reminder that when we give over control and let God write our story, He will write a story that is bigger and more beautiful than we ever could have imagined.

I’m so glad we didn’t look at Bei’s medical condition as that thing we couldn’t handle. Instead, we looked at the almost unbelievable story God was writing as He weaved our lives together and added the missing piece to our family.

– guest post by Amy: facebook || email

My husband and I love talking about adoption. Among our greatest joys is sharing our journey with others and communicating that God uses the most ordinary of people (like us!) to participate in something extraordinary.

I always feel a deep need to impress upon those who are considering the call to adopt that every family’s story looks different. The joys, the fears and the struggles are so individual and couldn’t ever be prescriptive for others. I know of families that have gone through unimaginable pain and trauma with their adoption journey. And I’ve known families who’ve experienced unbelievable joy and bonding. It is my prayer that as families share our stories this month, that prospective adoptive families will gain a realistic picture of the potential struggles with craniofacial needs, but will recognize the amazing joys and delights, especially as they relate to the journey to communicate.

Years ago I sat down with a doctor friend to obtain counsel as to what special needs our family was equipped to handle. We don’t live in a big city with renowned surgeons, and we really didn’t have a strong sense of calling to a particular “need.” At that point, we indicated on our form that we would consider a child with craniofacial abnormalities.

A lot of time passed. Our adoption journey was unusual (another long story), so after obtaining our LID in 2008, it would be another eight years before we were matched with a little boy and traveled to China. During that interim, God gave us two biological children, as well as a lot of other family changes. I quit my full-time job, and my husband began a second part-time job in addition to his full-time university teaching position.

Fast forward to March 2016. At that time, after a lot of uncertainties, our agency sent us a couple of files to consider, and we matched with a little 18-month-old boy who had a repaired cleft lip, and an unrepaired cleft palate. In our decision-making, I can honestly say that his special need never caused us much anxiety.

I was very naïve at that point. I assumed that cleft care was pretty straightforward, although I did enough reading to know that there could be some challenges, depending on the child. We thought we were mentally prepared for the journey to surgery and the years of speech therapy that would be ahead of us. Our last update before we left for China showed that our son was very healthy and robust – a far cry from his 9-month-old referral photo.

When I met Asher, a month and a half before his second birthday, he was basically non-verbal. That’s what his file had indicated, and that’s what I found to be true. He did make noises, and I was constantly asking our guide if she recognized them to be approximations of Chinese words. She couldn’t recognize any of his sounds.

He had no problems eating during our weeks in China, although his paperwork had indicated that he was primarily on bottles. He also did not need the special cleft bottle that I had brought along. I had also brought a specific sippy cup that a fellow cleft adoptive mom had suggested, so we worked hard on that from the beginning, and he eventually was able to drink water easily from it by the time we left for the USA.

As soon as we got home, I started all the rounds of appointments with his pediatrician, ENT, and palate surgeon and began the application process for early intervention therapy, including speech therapy. We are blessed to have a surgeon in our city who specializes in pediatric facial surgery, but since he is the only one, we had to wait to see him. And, after that initial consult, there was another long wait for surgery. I wasn’t worried about that – from everything I had read it was not a bad idea to have plenty of bonding time before going into major surgery.

Asher’s ears were pretty typical for a little boy born with an open palate. His hearing tests came back indicating that he needed intervention, so our ENT (a fellow adoptive China dad!) put in ear tubes which had an almost immediate effect.

What delighted us the most was that upon coming home, Asher almost immediately began to try to speak. Although there were many sounds that he could not produce, the point was that he was trying. We were thrilled to find a speech therapist whose specialty was working with cleft kids, and she began working with him verbally and with sign language just as soon as we could get the paperwork approved. Even though he would ultimately not have his palate surgery until nine months after coming home, he made consistent progress with his speech therapist in the interim.

Surgery was a challenge – as I’m sure it always is. Asher was an avid ambidextrous thumb sucker, so for our 2-year-old to wake up with arm restraints was extremely traumatic. However, after that first rough week, he healed amazingly well. He ate his soft diet without too much protest. Favorites were a porridge made of ground up cheerios with milk and chicken broth, quinoa, and cooked broccoli pulverized in our blender. And he never went back to thumb sucking.

As we entered this new life of doctors and therapies, I began to deepen in my understanding of the challenges connected to this special need. When I was in China, I remember feeling almost embarrassed that Asher even was considered to have a special need. The other families in my travel group were adopting children with profound special needs – Down syndrome, blindness and profound hearing loss. However, once we came home, I began to understand that communication struggles could be much more profound than I had imagined.

In the Lord’s providence, Asher himself has not experienced a great deal of struggle. Everything has certainly taken time – and he has not always gracefully submitted to the multiple surgeries, procedures, and therapies. However, as I’ve read more about the cleft community and built friendships with other families, I began to understand that there is often no straightforward path to communication and healing.

While Asher has made steady progress with his speech and has not required additional palate surgeries, I began to meet families whose children had experienced myriad surgeries due to fissures and failed bone grafts. Our dearest adoptive friends have experienced the complications of multiple p-flap surgeries and sleep apnea.

We’ve learned to not take the road to communication for granted.

The biggest key to Asher’s progress has definitely been the amazing speech therapists that have poured their lives into him. He will have been home three years this September, and the three women that have worked with him have persevered through toddler willfulness, inattention and just plain orneriness. I will forever be grateful to them and to the Lord for giving him the gift of communication.

As Asher gets ready to turn five this fall, and we begin to think ahead to school, I am encouraged that God will continue to provide the people he needs on this journey.

I know that as Asher matures, he’ll face new challenges – his bone graft, extensive orthodontic work, decisions about cosmetic lip revisions and scarring, as well as dealing with the grief that adoptive children face. One of the things we are trying to do as a family is provide him with friendships with other adoptive children so that as he grows, he will have friends with whom to relate and share.

We cannot imagine our life without our precious boy. He delights us and continues to teach us what love looks like.

We will never take for granted the priceless gift of communication.

– guest post by Anne