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
WELL DONE, my friend! Your sweet girl is a gift to us ALL who are privileged to know you. SO happy to have friends like you on the journey 🙂
Thank you, Jane, for stirring our heart through your family’s story. And for being brave enough to write!
What a wonderful true life story. Hard to believe it has been two years. I love how God equips each adoptive family to meet the individual needs of each adopted child. He is faithful !
What a wonderful article from an incredible mom. I am honored to know you.
As an adoption advocate, especially for kiddos with albinism, I can underscore the testimony of Jane’s post above. I am the blessed mom of seven, four who were also adopted from China with the special need of albinism. They are beautiful, amazing, and brilliant! Regarding developmental delays, this can be true for any child adopted from an orphanage depending on caregiver to child ratios. Low vision can play a part in the timing for learning to walk, and especially depending on the opportunity and amount of time in the orphanage they have to practice. Our four were adopted from ages ranging from 20mo to 7.5 years, and just one had a significant developmental delay similar to Mercy’s who, like Mercy, quickly advanced and is now developmentally on track with her peers. Family therapy is the best therapy! Most importantly, for any family considering a child with albinism, there is a Facebook group for you to ask questions of experienced parents. There are many children with albinism who are waiting for their forever family to bring them home. You are welcome to join this group if you would like more information: https://www.facebook.com/groups/ProspectiveAlbinismAP
I totally forgot about the prospective Facebook group! Even though I actually mentioned it above, so thanks for commenting Kristin!
This is an amazing family, story, and what a girl she is!! Our family loves her SO much, and we are forever grateful that God brought her into our lives through these friends. It wasn’t an easy journey in many ways to bring her home, but your testimony has blessed us and so many… God’s handiwork, power and love on display. Thank you, God, for Mercy!
Jane, Well done! Beautifully written from the heart. What a precious work of God in the hearts of a very precious family. So blessed to know you all. <3
Precious little Mercy came into this world with a message from God’s heart. She is living it out in your family to bring you all closer to Him.She is a beautiful child, full of grace,who raptures your heart. Thank you for sharing a beautifully written word. It helped me to understand Albinism and all of its challenges. God bless your family for giving Mercy your hearts and your home.
What an amazing love story! Thank you for educating us on albinism. Awesome to see how Mercy thrived when she received the nurturing love of family. Thank you for living out God’s word regarding what He calls, “True and Pure Religion” in James 1:27. May He richly continue to bless each one of you; you are a beautiful family in Him!