Tuesday, February 20, 2018

Two years



Before daylight Milo was perched in front of the wood stove, telling me the forecast, delighting in the possibility of snow. As siblings tromped down the stairs, we waited impatiently for the first flakes. Someone handed me our morning's book, and with my coffee cup in hand, we read about Shackleton's Shipwreck at the Bottom of the World. "Were there elephants on Elephant Island?" Milo asked. We talked about elephant seals and pachyderms, and then it was time for chores and oatmeal and exclamations over the newly white world outside. He practiced his piano lesson, read aloud, helped Mercy with her spelling words, and worked division problems. Schoolwork completed, there were shoes and scarves to tie and snowmen to make.

Two years ago Milo was faltering at cracks in the sidewalk and using gestures to communicate. Today, after working through English grammar lessons and math story problems, he was a grinning participant in a snowball fight. Milo is eleven now. He plans on playing basketball someday like his big brothers, undettered by his polio-affected limbs. He loves to create and explore, sing and make music. He is brave and kind and tenacious, and it is a humbling gift to mother this child.

We could have missed this.

A dear girlfriend of mine lost her life just days ago. We are reeling here, our entire community attempting to navigate this grief. And as the snow continues to fall outside my window I am reminded that we don't know what days we are given, but we are asked to spend them well. As we long for heaven, we carve out a sliver here on earth. My arms are filled with treasures I could have never imagined. I am so thankful that we didn't miss the gift of Milo.




Saturday, June 18, 2016

Diagnosis

Cerebral palsy. They were the words on his chart, translated from Chinese, a diagnosis based on observation of a 5 month-old found wrapped in a red blanket. He was three before he walked, and at 9 years old he would still struggle with steps and a steady gait.  His right hand would barely grip a pencil. But when we reviewed the thin file holding his medical history, things just didn't add up, and nine months later, this spikey haired boy would become our son.

When Milo joined our family in February, his physical therapist daddy continued to wonder about the inconsistencies. His muscles weren't spastic, they were flaccid, and the presentation of weakness was asymmetrical. Our first visits with a team of specialists in March left us with more questions than answers.

This week, we spent two more days at Seattle Children's Hospital.


Milo was delighted with the ultrasound images of his kidneys, charming the tech into letting him peek at his heart.


He passed an audiology work-up with flying colors, and surprised the nurse at his ophthalmology appointment as he tried to make words out of the strings of letters on his eye exam. X-rays of his hips were proudly shown to anyone who would look, and he made it through an unsedated, 40-minute MRI of his spine, with mama holding her breath for nearly the entirety.


As the results of his tests were collected and the neurodevelopmental/rehab team of doctors put their heads together, they invited one more doctor into the circle -- an infectious disease specialist.

We sat in the brightly lit exam room, Milo writing combinations of Chinese characters and English words on a white board. The doctor sat on a spinning stool and smiled wide. "The MRI gives us answers," she said.

Tears came, not because of his diagnosis, the word she would speak, but because his diagnosis was preventable.

Polio.

My son had polio as an infant, in a country that supposedly had eradicated the disease. His limbs were ravaged, his life changed, by a disease that we can stop.

If you are reading this as a parent of young children, I am asking you today to pause. There are people passionate -- and loud -- in their feelings against vaccinating. But today, I am asking you to listen to Milo. He still believes there is a brace for his leg that will allow him to run like this brothers. And although he cannot lift both arms above his head, he longs to do the monkey-bars like his sisters. His life is forever altered by a preventable disease.

As my children's passports fill with stamps, so will their exposure to diseases that we falsely believe no longer pose a threat. Please consider carefully your decision about how to protect your children...and think of the gift of Milo's life.

Friday, May 20, 2016

Three months


He now has too many English words to count. He asks less frequently for noodles and more often for "bro-co-li." His shins are bruised, and his arms are sun-gold. He knows all his letter sounds and can spell more than a dozen words (thanks to Elizabeth). He finished a 2K race. He tattles and is tattled on. Playing matchbox cars, building block cities or working through math problems...he is able to stay focused for longer stretches. He grumbles at schoolwork and shrieks with joy when daddy gets home. He sings everywhere and pets the dog. Over and over again he draws pictures of us in a house with hearts and writes, "Milo loves Mom and Dad" and presents his artwork with a countdown to the grand reveal and a hug.

This is what three months home looks like here. It is hard and sweet and exhausting and mostly just...amazing.