May 18, 2019 albinism, developmental delays, Developmental System, Family Stories, global developmental delays, older child adoption, orphanage realities, Skin Conditions 7 Comments

We entered into this adoption full of hopes and dreams just like most people. However, we also understood the realities, especially when adopting from China. We knew the gambles, had read all the blogs and books and articles we could get our hands on. We knew to expect the unexpected… or so we thought. We …Read More

October 5, 2018 epidermolysis bullosa, September 2018 Feature - Skin Conditions, Skin Conditions, Whitney 1 Comments

Epidermolysis bullosa. It’s a bit of a mouthful, and that’s just the start. Beyond the general diagnosis lie various types and subtypes that add multi-syllabic words to an already difficult to pronounce condition. Epidermolysis bullosa is the condition our daughter was born with. It causes her skin to be extremely fragile – shearing off and …Read More

September 27, 2018 adopting as first time parents, adoption community, epidermolysis bullosa, Family Stories, September 2018 Feature - Skin Conditions, Skin Conditions 0 Comments

According to the Dystrophic Epidermolysis Bullosa Research Association (DEBRA), a U.S. based nonprofit organization that supports the Epidermolysis Bullosa (EB) community, Epidermolysis Bullosa (or EB) is a rare, genetic connective skin condition in which not enough protein is produced to allow skin to adhere to itself. In the U.S., one of every 20,000 births are …Read More

September 11, 2018 adopting as first time parents, Adopting Scenarios, albinism, Family Stories, September 2018 Feature - Skin Conditions, Skin Conditions, switching to another country 2 Comments

It was only a couple of months after we were married that my husband and I started researching adoption. We both wanted a family, and with me being over 40 and having a history of endometriosis, conception without major fertility treatments seemed nearly impossible. We decided, for us, it was more important to parent a …Read More

September 5, 2018 adopting again, birthmark, developmental delays, Family Stories, linear sebaceous nevus, older child adoption, September 2018 Feature - Skin Conditions, Skin Conditions, speech delay, undiagnosed SN 0 Comments

In 2011, we received the file of a little girl, age 3. Her file read “delayed mental development” and it included a very low DQ score. We were able to ask questions and receive a video of her reading flashcards and reciting the names of the items on the flashcards. “Okay,” we thought. “Yes, she’s …Read More

June 30, 2018 a father's perspective, adopting as first time parents, albinism, Dads, first year home, June 2018 Feature - Celebrating Dads, Newly Home, Perspectives, toddler adoption 1 Comments

Since I was super smart about being a parent before I was one, I would often compare it to bowling with bumpers. You put up boundaries, and those boundaries keep your kids in line. BAM – parenting. Done. Where’s my book deal? But so far, six months in, it feels more like I’m attempting olympic …Read More

February 26, 2018 a father's perspective, adopting as first time parents, adoption realities, albinism, China trip, Dads, Family Stories, Gotcha Day, Skin Conditions 17 Comments

Elsie and I had very different ways of preparing for our China adoption. She spent the better part of a year setting up a nursery in our home, buying clothes, and watching other “family day” videos on Youtube. She is an optimist and a planner, which makes her the perfect counterpart to a cynical procrastinator. …Read More

January 5, 2018 epidermolysis bullosa, Skin Conditions, Whitney 2 Comments

Epidermolysis Bullosa (EB) is a group of inherited genetic skin disorders. There are five major types of EB and within each type there are subtypes. People affected by EB are often called Butterfly Children when they are younger as their skin is as fragile as a butterfly’s wings. Though it is a debilitating, painful, and …Read More

November 30, 2017 adopting as first time parents, albinism, medical needs checklist, paperchase, Stefanie, waiting for referral, waiting to travel 0 Comments

I found Elsie Larson of A Beautiful Mess on Instagram (@elsielarson) on #worldadoptionday and subsequently spent an inordinate amount of time reading about all the cool stuff she does… including growing their family through adoption. When, a week or so later, I listened to her podcast (in which she shares her thoughts on special needs …Read More

September 4, 2017 albinism, Family Stories, IEP, public school, September 2017 Feature - Skin Conditions, September 2017 Feature - Visible Special Needs, Skin Conditions, TVI, visible special need 2 Comments

Emily loves dolls, dress-up, panda bears, ballet, singing while playing her brother’s ukulele upside down, blowing bubbles, Disney World, soccer, and “preaching” to us from her children’s Bible. She has a quick wit and makes us laugh every day. And, she was born with a condition called albinism. And that’s really it. Albinism is just …Read More

September 1, 2017 albinism, birthmark, burns, Congenital nevus, epidermolysis bullosa, Favorite Family Stories, ichthyiosis, September 2017 Feature - Skin Conditions, Skin Conditions 0 Comments

The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos. We do …Read More

December 5, 2016 epidermolysis bullosa, Skin Conditions, undiagnosed SN, Whitney 0 Comments

Medical needs adoption is one you have to walk into with your eyes wide open. Though prospective parents may have a medical history presented to them before saying the biggest “yes” of their lives, you have to know this: there are unknowns. There will always be unknowns. We knew about the unknowns before saying our …Read More

November 13, 2016 birthmark, Family Stories, hemangioma, phakomatosis pigmentovascularis, port wine stain, Vascular System 2 Comments

The Lord uses many avenues to speak to the hearts of his people and call them forward to adoption. For some that call comes from the Bible and teachings of the church, for some that call comes through knowing people who have adopted, some people meet the vulnerable in orphanages and fall in love, and …Read More

November 5, 2016 adoption realities, Attachment, epidermolysis bullosa, Whitney 4 Comments

Raise your hand if you tend to overthink things. Now, raise both hands, jump up and down, throw your head back and yell, “Yes, this is me!”, if you’re an adoptive mama and you tend to overthink things. Overthinking is a habit that can be dangerous in the best of situations. Overthinking when you’re processing …Read More

October 5, 2016 albinism, declining a referral, Family Stories, October 2016 Feature - Working Moms, referral, Skin Conditions, TVI, waiting for referral, working mom 20 Comments

Navigating work and being a mom is tough under the best of circumstances, but it can feel even more daunting when you toss in the complex issues that accompany parenting your newly adopted child. So this month on No Hands But Ours, some been-there-done-that working mamas are here to help, with advice on everything from …Read More

October 3, 2016 Education, epidermolysis bullosa, private school, September 2016 Feature - Back to School, Skin Conditions, Whitney 0 Comments

“Shoot for the moon. Even if you miss, you’ll land among the stars.” ……… There was once a mama desperate to make it to the other side of the world to see her daughter face-to-face… and though the thrill of the moment could never be eclipsed, she eventually stopped looking at the moon, and forgot …Read More

September 28, 2016 epidermolysis bullosa, Family Stories, September 2016 Feature - Skin Conditions, Skin Conditions 0 Comments

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), abbreviated as EB, is a rare, genetic disorder that impacts connective tissue. Approximately 200 children a year in the U.S. are born with EB, and it’s known as “The Worst Disease You’ve Never Heard Of”. Children with EB are referred to as “butterflies” due to the fragility of their skin. There …Read More

September 26, 2016 adopting a boy, albinism, Family Stories, nystagmus, September 2016 Feature - Skin Conditions, Skin Conditions, TVI, vision issues 1 Comments

No Hands But Ours is focusing on skin conditions this month. My son has albinism, but I hesitated to write our story. Heck, our dermatologist has discharged us. If my son ever has a suspicious mole or a serious burn, we’ll go back. Otherwise, I am capable of – the dermatologist pointed out – totally …Read More

September 17, 2016 albinism, Education, Family Stories, older child adoption, public school, September 2016 Feature - Skin Conditions, Skin Conditions, TVI, vision issues 3 Comments

Her name was spoken to us before we even knew who she was…. We had adopted from China in 2011 and just started the process to adopt again. One night I let myself start thinking about names for our new little one and after spending more time than I care to admit looking at baby …Read More

September 14, 2016 albinism, Family Stories, September 2016 Feature - Skin Conditions, Skin Conditions 1 Comments

We didn’t plan to adopt a child with white hair. I wouldn’t assume many do when they consider adopting a child from China. I fell in love with our son Noah’s face and short description one night while perusing the waiting children on RainbowKids. Adoption was something my husband and I had prayed about, discussed …Read More

September 7, 2016 birthmark, Congenital nevus, Family Stories, giant congenital nevus, medical needs checklist, medical waiver, referral, September 2016 Feature - Skin Conditions, Skin Conditions 4 Comments

When my husband and I first started looking into adoption, we were told that because of my epilepsy, we could only apply for a special focus child. In Adoption circles, Special Focus means either that the child has more than one medical condition, or has a more severe medical condition. Sometimes the label is given …Read More

September 2, 2016 adopting a boy, Family Stories, ichthyiosis, September 2016 Feature - Skin Conditions, Skin Conditions 7 Comments

I love adoption. It’s beautiful. It’s messy. It’s hard. It’s the big stuff — hope, joy, grief, love, sacrifice… wrapped up in one. It makes a world of difference to a child in need. It builds families. It’s an example of God’s handiwork. And being part of anything God does is just, well, awesome. When …Read More

July 5, 2016 epidermolysis bullosa, Skin Conditions, Whitney 5 Comments

(Alternately titled: Taking a Child with EB to the Beach) Our family loves the beach. The sun, the sand, the salt-water burning in our eyes. The souvenir shopping, the jellyfish spotting, the ritual of going to eat ice cream on our last night of vacation. Taking that first glimpse of the ocean at the end …Read More

December 31, 2015 albinism, December 2015 Feature - Sensory, Family Stories, nystagmus, Sensory System, Skin Conditions, vision issues 4 Comments

For 2015 the NHBO team set a goal to focus on all eleven special needs systems, featuring a different system each month. We wanted to not only spotlight the needs within that system, but simultaneously grow the content here on No Hands But Ours. And with the help of the amazing adoption community, we succeeded. …Read More

September 30, 2015 albinism, developmental delays, Family Stories, September 2015 Feature - Skin Conditions, Skin Conditions 10 Comments

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, …Read More

September 15, 2015 epidermolysis bullosa, Family Stories, September 2015 Feature - Skin Conditions, Skin Conditions 2 Comments

I grew up in a third world country where the exotic butterflies are exquisite! My favorite had wings like brilliant sapphires on thin blankets of black velvet. They would flit by in glorious beauty and no matter how many times I saw them, they still took my breath away. It is hard to describe something …Read More

September 10, 2015 Family Stories, ichthyiosis, September 2015 Feature - Skin Conditions, Skin Conditions 0 Comments

We had been waiting months for “The Call” from our adoption agency. Our homestudy was complete and our dossier sent to China. We were waiting, on edge, to be matched with our daughter. And when the call finally came, I missed it. My phone was in silent mode in my purse and by the time …Read More

September 6, 2015 Congenital nevus, September 2015 Feature - Skin Conditions, Skin Conditions 0 Comments

“I may not be able to change the world, but I can change the world for one child.” That, in a sense, is how I have felt since my youth. We began our first adoption process in the fall of 2006 pursuing China’s non-special needs program. Our small agency did not have a special needs …Read More

September 3, 2015 epidermolysis bullosa, September 2015 Feature - Skin Conditions, Skin Conditions, Whitney 2 Comments

What does life with EB look like? It looks like swinging on swings at the park. Epidermolysis Bullosa is a genetic connective tissue disorder. There are many types and sub-types, each affecting the individual in different ways. Regardless of type or sub-type, one thing that I have noticed about kids with EB, and their families, …Read More

July 5, 2015 epidermolysis bullosa, orphan ministry, other ways to care for the orphan, Whitney 2 Comments

There are adoptive families of all sorts. Families who adopt and have biological children. Families who have only adopted children. Families who adopt more than one over several years. Families who adopt two at the same time. Families who adopt only one. Families who knew from the start that they would adopt one day, and …Read More

June 30, 2015 amputation, burns, contracture deformity, Family Stories, June 2015 Feature - Orthopedic, Orthopedic, prosthetics 0 Comments

That would probably not have been our reaction if you would have told us seven years ago that we would have multiple pairs of prosthetic legs in our house. In early 2009, we were researching China’s special needs adoptions after adopting twice through the non-special needs program. Some of the special needs just looked too …Read More

May 31, 2015 body scars, burns, contracture deformity, Family Stories, scoliosis, Skin Conditions 2 Comments

This is our family story or what the daily life of living with burns is like. I want to make sure you all know that each story is unique and the daily life for another child with burns and their family could be much different. There are many things to consider with burns; location on …Read More

May 20, 2015 birthmark, Family Stories, hemangioma, Kassanbach Merritt Syndrome, May 2015 Feature - Vascular, Vascular System 1 Comments

When I first read Abby’s file and read the diagnosis Hemangioma and Kassanbach Merritt Syndrome (or Phenomenon), I thought to myself, “How bad could it be?” She has a birthmark or as her file called it ‘a large hemangioma’ on her neck and chest, surely once we get her home we can ‘fix’ it! Then I did …Read More

May 19, 2015 albinism, Family Stories, Skin Conditions 7 Comments

Our adoption story began about four years prior to our actual adoption. I was sitting at work one regular day and just had a random thought to research international adoption. This was not something we had previously discussed and wasn’t something at all on our radar screen. We had – at that time – two …Read More

May 1, 2015 birthmark, Family Stories, Klippel-Trenaunay Syndrome, May 2015 Feature - Vascular, port wine stain, Sturge Weber Syndrome 2 Comments

“You can’t direct the wind but you can adjust your sails.” – Unknown No truer words have I ever read that bring home the reality of our daughter’s diagnosis. Our adoption journey is a story in itself, and best for another time. We have had several wise friends point out that the complications of even …Read More

March 12, 2015 epidermolysis bullosa, Family Stories, Skin Conditions, Whitney 9 Comments

Our journey as a family into EB adoption started with eczema. True story. Out of the three biological children we already had, two of them had big time problems with eczema. So, when one day I was scrolling down the waiting child list on our agency’s website and saw “dermatitis”, my heart leapt. Dermatitis? I …Read More

March 4, 2015 epidermolysis bullosa, Family Stories, Skin Conditions 3 Comments

When my husband and I began the adoption process, we knew we were open to adopting a child with special needs, but we didn’t have any specific need in mind. We had a very broad medical checklist, and we planned on getting our LID and having our agency match us with a child. But then …Read More

February 18, 2015 body scars, burns, contracture deformity, Family Stories, Skin Conditions 5 Comments

In looking back I can see now that the seed was carefully planted long before we knew of her. The unknown preparation came in the forms of books, a family story from a friend, career decisions and a few other situations that seemed of random nature at the time. It wasn’t in our initial scope …Read More

February 12, 2015 Congenital melanocytic nevus, Congenital nevus, Family Stories 3 Comments

My husband was adopted domestically as an infant. As high school sweethearts, I heard him share his personal testimony several times. His testimony centered around his physical and spiritual adoption. “For he chose us in him before the creation of the world to be holy and blameless in his sight. In love, he predestined us …Read More

November 19, 2014 albinism, Family Stories, Skin Conditions 1 Comments

Our daughter Phoebe was almost nine years old when we adopted her. She is our sixth adoptive child from China, our fifth adoption of an older child, and our first with albinism and with severe visual impairment. The only previous experience my husband and I had with visual impairments is one of our teenage daughters …Read More

September 16, 2014 Family Stories, ichthyiosis, Skin Conditions 3 Comments

Every adoption story is unique but if there’s one common thread, it has to be all the waiting that is involved. Waiting for the home study to be completed, waiting for the dossier to be sent, and waiting to travel. But waiting to find out who your son or daughter is may be the hardest …Read More

May 17, 2014 adopting SN: the process, adoption realities, birthmark, Chinese Culture, hemangioma, Kayla 3 Comments

I’ve told the editors of this blog that I am running out of things to write about regarding the special need that Jubilee (that’s my daughter) has. It simply doesn’t matter to us any more that she has a skin deformity on her torso. It will matter to her one day, no doubt, but we …Read More

April 17, 2014 birthmark, hemangioma, Kayla 4 Comments

Sometimes I think people think too much. My husband and I, on the other hand, tend to err on the side of reckless. But I have to say that in our 12 years, reckless has served us well. Our very nuptials were hasty. We jumped into love like a kid into cold water. We got …Read More

March 17, 2014 birthmark, hemangioma, Kayla 1 Comments

My daughter and I reclined comfortably together at a park yesterday, beside a calm lake in which Chinese men, bent with age, stood stirring the water around their boats with long oars. A thousand Chinese faces passed us by, upturned at the sunny sky and squinting at their beloved kites in the wind. Some of …Read More

February 17, 2014 birthmark, hemangioma, Kayla 1 Comments

We call her Jubi, or Jubi Sue, or sometimes Jubes. But her name is Jubilee, and she loves her name. The other day her daddy wrote “Jubi” on her paper cup and she was not happy. “Where are the rest of the letters, Daddy?” she asked with a frown. “My name has an l and …Read More

January 17, 2014 birthmark, hemangioma, Kayla 0 Comments

Jubilee didn’t just get a mom and dad when she was adopted. She got three brothers, three grandparents, three uncles, one aunt, and three cousins. But even though adoption brings children into extended families, church bodies, and communities, the most important thing adoption does is place children into immediate families. Not immediately families, mind you, …Read More

December 17, 2013 birthmark, hemangioma, Kayla 0 Comments

“To everything there is a season, a time for every purpose under the sun.” Ecclesiastes 3:1 Adoption has seasons of its own. The first season can last for years. It starts as a seed, usually, planted in our hearts, by friends, or media, or God. During this time, we pray for wisdom, seek the counsel …Read More

November 20, 2013 Congenital nevus, Family Stories, Skin Conditions 9 Comments

During the first few months of our adoption process, I poured through waiting child files and researched varying special needs in anticipation of finding our child.  When we finally got the call from our social worker telling us she had a file for us to look at, I was ecstatic. I thought we had a basic knowledge …Read More

November 17, 2013 birthmark, hemangioma, Kayla 0 Comments

For the past three weeks, my mom and mother-in-law have been visiting from the States! Jubilee has especially loved it, with two more women in the house to offset the incessant wrestling matches and Lego building. “Let’s read magazines,” she suggests, handing each of us a copy of Good Housekeeping or Rachael Ray. We snuggle …Read More

October 17, 2013 birthmark, hemangioma, Kayla 1 Comments

All kids have “love tanks” – deep wells within their hearts which hold the fuel they run on: love. What happens when those tanks run low? I’m no expert, but I can tell you what happens when my Jubilee’s tank is low. “Mom, what did you buy at the store? Hi Mom. Mom? Mom, where’d …Read More