The server looked at Jack in his baby carrier as we sat in the restaurant booth. “Will his legs grow out normal?” She asked.
We explained that his legs would always be shorter than others. “How sad,” she replied.
The stunning Mrs. Clark and I knew before Jack was born that there was something up with his lower body. His birth mom had two separate ultrasounds done, and the only conclusion that doctors agreed on was they they didn’t know what was going on. They just knew the legs weren’t as long as they would be in a normal situation. At that point, the family who WAS going to adopt him backed out. The birth mom was left scrambling to find another home for her unborn son. We were contacted about him, because we had adopted our other son from the same agency. We were already grizzled veterans of adoption paperwork. My family also had experience with disabilities in the past. We asked to be considered, knowing just as much as the doctors did – which wasn’t much.
Jack was born two months later.
His right leg was about 2/3rds the length of a standard one. His left leg at birth looked more like a foot coming from his torso. He began impressing doctors immediately at birth, with strength levels that were way higher than standard. Jack was holding his head up at two days old, where his older brother had floppy head for quite a while. Two weeks later we found out what happened: Proximal Femoral Focal Deficiency (PFFD), which is a congenital condition that happens 1 in 50,000 births. In laymans terms, the trigger that tells the body to grow legs misfired. Essentially Jack was left with no femurs, and each leg has a different level of development.
But for what he didn’t get down low, he got back everywhere else.
His body strength levels continued to increase as he got older. He couldn’t really crawl so he dragged himself around at the same speed. Eventually he developed a way to motor about on all fours that was really fast. He also began walking on his hands, and developed a well-defined six pack. He also gained quite a throwing arm. Most importantly, Jack learned to do things the Jack Way. He isn’t built like anyone else, so he has become independant and resourceful when confronted by a physical challenge.
One day he walked a mile home from school when he missed the bus. At 9 years old. On a prosthetic leg.
Occasionally Jack has commented to us that he wishes his legs were regular length. It’s heart-wrenching; he sees the kids around him getting taller and, like anyone who is a school-age boy, he is sensitive to physical height. We understand his loss. It has to be hard for him and no doubt makes him wonder what life would be like if the leg trigger had fired normally. We try to remind him of all the good stuff he DOES have – strength, looks, character, trustworthiness, and determination. Helping him through what is essentially a grieving period can be difficult, because his idea of perfect legs is what he sees around him on others. But we didn’t sign up for perfect.
We signed up for Jack.
And what we got far outweighs any physically perfect kid we could imagine. He is adored at church and at school. His smile is infectious. Thankfully he’s experienced little trouble with bullies at this point; only a couple instances occurred at school, and each one was dealt with quickly by the administration. In the second instance he pushed back and stood up for himself. The principal said, “I told Jack if was okay to stand up for himself in a situation like that, especially when someone is swinging at him.
“I did ask him not to use the F-Bomb again though.”
Do I wish that Jack’s legs were normal length? The thought only crossed my mind recently. I’ve helped him use was he has to tackle life. So no, I don’t really wish that it was different. He is the Jack I signed up to father. He is a shame to no one, and shines on everyone. He would trigger the same love in me if he was my biological son.
Consider this: If the leg trigger had fired correctly, I wouldn’t be his Dad.
I find that awe-inspiring. While those legs aren’t standard-issue, they are going to help create who he is later in life. They may carry hard lessons – ones that need to be learned. I’m confident that he can overcome. Sherry and I are just trying to make sure we support and encourage the stuff he has control over.
So to the family who backed out of adopting Jack before he was born: Your Loss.
The server that day saw the imperfections of our physical world represented in a tiny baby, not realizing that the whole person is more important. We didn’t sign up for perfect. But Jack has given us all the perfect we could imagine.