More Love, Less Fear

It’s Craniofacial Awareness Month! So, I’ve lived how many months and never really knew that this existed? Alas, now I do and so do you!

Apert Syndrome is included in the craniofacial family because two of its signs/symptoms are craniosynostosis (fused sutures) and apoptosis ( inset eye sockets that make the eyes seem to pop forward).

Why is it important to become aware of craniofacial differences? Once we understand something, we don’t fear it and once we know someone we don’t fear them.

Let’s be real. Maggie looks different than a majority of the population, and when we encounter someone who is physically different we cannot help but look and wonder. Why does that person look different than me? Are they okay? Are they like me in other ways or are they different than me in other ways? I will share that one of our kids upon seeing Maggie’s hands for the first time announced, “She has hooves!” They then proceeded to list every animal with hooves. It was not meant to be mean, it was a child’s effort to understand, and honestly it made me laugh.

Have you ever watched a documentary in which a person or community completely isolated from other cultures encounters a person from the outside world? If there has ever been a negative experience with outsiders the interaction is usually one fraught with hesitancy and fear. In other instances where there is a willingness to understand and share, the interactions proceed in a humorous and uncomfortable way. Both sides abandon social mores. Adults become like giggly little kids who laugh because they don’t know how else to respond, they mimic in order to understand, they repeat sounds and words in hopes of communicating. They become vulnerable and that is where the bond is made.

I would venture to say the latter model is a good model for our modern world. We cannot change how our brain is responding nor our impulse to look (seriously, it’s normal read here: https://www.google.com/amp/s/www.wired.com/2009/05/freaks/amp ) but what we can do is decide how to proceed from there.

We can rubberneck like at a car accident or we can behold as if viewing a sunset. We can choose to smile, appreciate, say “hi” and acknowledge a person’s humanity or we can stare, be silent and make judgements.

I have not had an encounter to date in which someone has been disrespectful towards us or Maggie but I heard this week of a young man with craniosynostosis who had been bullied for 5 months, being repeatedly punched in the head. The family is now in the process of doing scans to see if he needs reparative surgery. That young man was visualized like a car accident, not as a sunset.

I have had a lot of time to reflect on all of this and this week was able to see how much Maggie has opened my heart.

There is a site online called Reece’s Rainbow which posts pictures of children from around the world who are in need of adoption. What makes this site stand out among others is that these kids are medically needy children who may or may not have disabilities. Kids with cleft palates, kids with Down Syndrome and kids with Apert.

I became familiar with Reece’s Rainbow years ago and over the years I found myself visiting to look at these children and read their stories. I would look into their eyes, and talk to God. I would see their need and immediately fear would give rise. “I can’t adopt a kid, that’s too hard. Their medical needs would be so overwhelming! Someone else would be so much better for them.” Yet in the recesses of my mind I knew that that resistance was more about my heart’s condition than anything else, so I would end with a prayer, “Your will Lord.” I wanted the Lord to open my heart to the possibility. I didn’t want to live with a part of my heart closed off to another person, especially because of fear of what it might mean to take care of them.

The Lord has a funny way of answering prayers.

Today I went on Reece’s Rainbow for the first time since Maggie was born and oh… has Maggie broken my heart wide open for these kids. The Lord gave me eyes to behold and every child was my little Maggie.

I don’t know what this means for our future but I do know that the Lord answers prayers and He is using Maggie to open my heart, to make room for more love, more room for beholding and less room for fear.

Check out Reece’s Rainbow: https://reecesrainbow.org/