In 2011, my husband and I attended a banquet to benefit Ukrainian orphans. Our hearts were stirred for orphans that night. After praying for God’s direction, we chose All God’s Children International as our agency and began the process towards a special needs adoption from China.
One afternoon I scrolled through the Rainbow Kids website, looking at page after page of children, all with dark hair, dark skin, and dark eyes. Then I saw a different face on a little girl. She had porcelain white chubby cheeks with a hint of pink, a snotty nose, squinty yet vibrant blue eyes, and a shaved head of white hair. Didi was captivating and unique, but was she Chinese? I studied this rare beauty who captured my heart. I soon discovered she was Chinese with a genetic condition called Albinism which affects the pigmentation of skin, hair, and eyes. I shared her picture with my husband and he, too, was smitten.
Because Albinism was not a special need we had considered, we did not check its box on the medical needs acceptance form. I inquired about Didi anyway. We prayed hard for this little girl and believed she could be our daughter, but one day her picture was gone. We discovered that Didi had passed away, dying as an orphan. Grieving, her sweet face pressed into our hearts, we added Albinism to the list of medical conditions we would consider.
Didi’s brief life and premature death awakened us to new possibilities, birthing promise for another little girl. Her name is Mercy.
As with most adoptions, we met Mercy when we received her file from our agency. We saw her face for the first time — porcelain cheeks with a hint of pink, crystal blue eyes, white hair.
From a video and photo update, she appeared to be developmentally delayed which was later confirmed by an international adoption pediatrician. This sparked fear and concern, but being connected to the Albinism community through social media, we were encouraged that delays could be normal.
When we met Mercy at the orphanage, we quickly recognized that the delays were real. She was 27 months old, still bottle fed, unable to walk, her sitting position lacking posture, her core lacking strength. She was non-verbal, although she seemed to understand Mandarin.
After homecoming, we took a visit to a children’s hospital where a complete medical evaluation revealed she was nine to twelve months old developmentally. We’re not sure why she didn’t make more developmental progress in the orphanage, but we speculate that her vision, on the poor end of the spectrum, played a key part.
In a home with three older siblings, Mercy received much stimulation, probably more than needed. At lightning speed, she grew and developed and met milestone after milestone. Within two years, she bridged the gap and caught up to her actual age.
What is life like with a child with Albinism? For our family, we forget she has it. Yes, we treat her for her various needs, but daily life is pretty normal. Because of the lack of pigment in her skin, she is prone to sunburn, requiring a good sunscreen every couple of hours when we are outside. But that doesn’t deter her or us.
We have a pool which she enjoys all summer long. She runs in the park, rides her bike, roller skates, and rides a scooter. To protect her light-sensitive eyes, she wears a quality pair of sunglasses, and sometimes she dons a wide-brimmed hat. Since Mercy has very sensitive skin, she has stronger reactions to mosquito bites and shots than our other kids, and sometimes she has episodes with eczema. As a precaution, we see a dermatologist yearly.
Our daughter is like many people with Albinism: she can see, but her functional vision changes in different settings depending on the lighting. Tinted glasses give her the correction she needs. She, like others, has nystagmus, a condition causing her eyes to dance back and forth, something we are so used to now we don’t even notice it. Depth perception is difficult for her, so we give her cues when we’re walking in unfamiliar places, or she uses her cane to sense what is ahead.
We live in an area where vision services are easy to access. One hour a week, a Teacher of the Visually Impaired (TVI) comes to Mercy’s preschool. She works with the school to ensure that Mercy can travel safely and independently in the classroom, through the hallways, and on the playground. She helps the teacher provide an uncluttered, high contrast environment. She offers manipulatives and books with texture. She highlights cutting lines on worksheets and increases font size when necessary. While we have not ventured the grade school path yet, I know there is technology available to help older children, though it can be costly.
Children with Albinism can attend regular schools, receive a great education, and go on to college and a life-time career. They are normal people, with a beautifully unique look, and there are few things they can’t do.
Our daughter is amazing. We have been blessed to have her join our family. She is a joy, with determination beyond what I have ever seen. Her determined spirit is the very thing that has helped her overcome so many obstacles, and I know it will carry her well into her future.
For information about Albinism please visit the National Organization for Albinism and Hypopigmentation (NOAH) website.
– guest post by Jane