Beauty in the Unknown

March 25, 2018 adopting a boy, alpha thalassemia, Blood Conditions, Family Stories, March 2018 Feature - Blood Conditions, older child adoption, thalassemia 0 Comments

I remember the long days of waiting to be matched with our son. I remember every time the shared list would come out in China, and every time our amazing social worker would tell us we did not have a match yet, and the battle between grief and trust. Trusting that God had this. He …Read More

Gaining Independence: Living with Hemophilia

March 23, 2018 adopting a boy, Blood Conditions, Faith, hemophilia, hemophilia A, March 2018 Feature - Blood Conditions, Medical Momma 0 Comments

It’s hard to believe that our oldest son has been home for almost two and a half years. Before we adopted him, my biggest worry was his medical condition. He has Severe Hemophilia, a genetic bleeding disorder. In a nutshell, this means that his blood is missing one of the proteins that help it to …Read More

An Answered Prayer

March 21, 2018 adopting a boy, beta thalassemia, beta thalassemia major, Blood Conditions, Family Stories, March 2018 Feature - Blood Conditions, pre-adoption, reluctant husband, should we adopt?, thalassemia 1 Comments

Our adoption story began three years ago when God first planted the seed of adoption in my heart. I remember it so clearly, it was during the 2015 IF:Gathering live simulcast. I had watched the entire conference alone in my living room, soaking in all of the content from the amazing speakers. At the very …Read More

Thankful We Didn’t Know

May 23, 2017 adopting again, Blood Conditions, Family Stories, heart defect, May 2017 Feature - Vascular, Takayasu’s arteritis‎, undiagnosed SN, Vascular System, Von Willebrand 1 Comments

Almost four years ago, my husband finally said yes. Again. We had talked, I had prayed. I’d promised not to nag, prayed some more, and waited for that yes. When he agreed to begin our second adoption, he had limits. He had the idea to draw some lines in the sand of what special needs …Read More

An Unfinished Family Portrait

March 25, 2017 a father's perspective, adopting a boy, Blood Conditions, Dads, Family Stories, hemophilia, hemophilia A, March 2017 Feature - Blood Conditions, older child adoption, reluctant husband, should we adopt? 2 Comments

Looking up from a pile of leaves, a young, beautiful blonde-haired college girl smiles while being kissed on the cheek by a “somewhat handsome” college-aged boy. That young, twenty-year old girl, now even more beautiful than ever, is my wife, Amber. That college kid, who has not graced the twenty years since quite as well, …Read More

Glad We Didn’t Know: Adopting a Child with Von Willebrand Disease

March 22, 2017 Blood Conditions, March 2017 Feature - Blood Conditions, Takayasu’s arteritis‎, virtual twins, Von Willebrand 2 Comments

For four years I prayed that my husband would say yes to adopting again from China. And out of the blue he mentioned – in passing – that he felt like we had another child waiting for us. Within 24 hours, a friend had sent me a photo of a four year old little girl …Read More

Ten Frequently Asked Questions About Adopting a Child With Thalassemia

March 15, 2017 beta thalassemia, beta thalassemia major, Blood Conditions, Family Stories, March 2017 Feature - Blood Conditions, thalassemia 3 Comments

Kate, Chelsea, and Alissa are three friends who have brought home five girls with beta thalassemia within the last two years. They live in rural Montana – four hours from the nearest children’s hospital. All five of their girls are thriving with thalassemia and are truly living up to their name as the “Thal Thugs …Read More

What I Didn’t Know: Adopting a Child with Severe Hemophilia

March 9, 2017 adopting a boy, Blood Conditions, Family Stories, hemophilia, hemophilia A, March 2017 Feature - Blood Conditions, should we adopt?, undiagnosed SN 2 Comments

Adoption for us was not something we thought about for years. It was something that God spoke to us in one day. On March 25, 2013 my husband casually mentioned he had been thinking about adoption. At the time, our daughters were seven, four, and two. I was overwhelmed and had no interest in adoption. …Read More

March Special Needs Focus (and Favorite Family Stories): Blood Conditions

March 8, 2017 Blood Conditions, Favorite Family Stories, hemophilia, ITP (idiopathic thrombocytopenia purpura), March 2017 Feature - Blood Conditions, PKU, thalassemia 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

Our Iron Man: Adopting a Child with Thalassemia

March 7, 2017 adopting a boy, adopting out of birth order, beta thalassemia, beta thalassemia major, Blood Conditions, Family Stories, March 2017 Feature - Blood Conditions, medical expedite, older child adoption, thalassemia 4 Comments

Fluffing up his pillows around him on his hospital bed, I did my best to make him smile. We had learned together that love, smiles, silliness and laughter cross any language barrier. Though he was tired, he did manage a slight smirk that didn’t quite reach his usual smiley, almond eyes. This dance was still …Read More

The Rewrite in our Adoption Story: Choosing a Son

December 21, 2016 adopting a boy, Blood Conditions, cerebral atrophy, December 2016 Feature - Adopting a Boy, Family Stories, ITP (idiopathic thrombocytopenia purpura) 3 Comments

You make them. I make them. We pray they are the right ones. Choices. As a parent, we analyze and make decisions sometimes seamlessly and other times with great thought. When you are faced with a life-altering choice it weighs heavy on your heart and mind. When I began to weigh what it would mean …Read More

Then and Now: Ayla

November 9, 2016 beta thalassemia, beta thalassemia major, Blood Conditions, developmental delays, November 2016 Feature - Then and Now, thalassemia 0 Comments

November is Adoption Awareness Month. And our focus is Then and Now… glimpses into the lives of children – children who were once orphaned – who are now beloved family members. Daughters, sons, sisters and brothers who are now blossoming in the love of a forever family… ……….. “I do not think she will live …Read More

The Healer of All Wounds

October 23, 2016 beta thalassemia major, Blood Conditions, Katie 0 Comments

Maybe it was when the hospital chaplain asked too many intrusive questions in front of him and I saw his lashes flutter to cover the fear he wanted to hide. But his eyes shuttered for just the briefest of moments and my heart started to ache. “What is his condition?” “How often does he need …Read More

Thriving with Thalassemia

March 26, 2016 beta thalassemia major, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, older child adoption, thalassemia 2 Comments

My daughter’s medical information is scary. It has words like chronic and terminal. Add that to the fact that her orphanage has never had a child with her diagnosis live past the age of 14, and you start to really get a grim picture of her life. Now, wipe all of that away, because it’s …Read More

We Said Yes, Anyway

March 22, 2016 beta thalassemia major, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, older child adoption, thalassemia 2 Comments

“It’s so easy to live with! It barely impacts our day to day life.” “It’s a very complicated disease. It looks like it’s going to be another couple of weeks in the hospital this time…” You might think I’m referring to different disorders in the descriptions above. The truth is these were all things I …Read More

One Small Step, One Giant Leap

March 14, 2016 beta thalassemia, beta thalassemia major, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, should we adopt?, thalassemia 0 Comments

Our adoption story began years before we actually had the courage to take the leap and start the process to adopt internationally. On and off, literally for years, my sweet husband and I would each feel lead to adopt. Those feelings and promptings were most often followed by a conversation about the lack of finances …Read More

Learning Curve: Adopting a Child with Hemophilia

March 12, 2016 adopting as first time parents, Blood Conditions, Faith, Family Stories, hemophilia, March 2016 Feature - Blood Conditions, referral, waiting to travel, working mom 6 Comments

After a twenty-minute speech about what our daily routine would entail, followed by a list of possible complications, the Hematologist looked at me pointedly… “You know, it will be a steep learning curve for you all, but you will settle into a routine, and more quickly than you think. You’ll see. He’s just a boy.” …Read More

More Than Blood: Adopting a Child with Thalassemia

March 11, 2016 adopting again, beta thalassemia major, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, older child adoption, thalassemia 1 Comments

How do most kids get in a pool? They jump… full force, no holding back. They don’t know what the water temperature is, and they don’t care. They are so excited to be at the pool, they anticipate all the fun they are about to have, and it doesn’t bother them if the water is …Read More

The Story of MengYan

March 9, 2016 Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, thalassemia 1 Comments

MengYan’s story began in China, in Hunan Province. We do not know much about her birth or her birth family. She was found abandoned in a box at the front door of the local police station. She was a newborn at that time and was taken to an orphanage because her family could not be …Read More

#whatisthalassemia

March 8, 2016 beta thalassemia, beta thalassemia major, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, should we adopt?, thalassemia 1 Comments

Our Journey with Thalassemia First let me say this is not our story this is His story. If it was ours we would never know what thalassemia was nor would we ever have our precious kids. My husband and I have always wanted a large family and to grow our family through adoption, but never …Read More

Ripples on the Water

March 5, 2016 beta thalassemia, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, thalassemia 1 Comments

Eight years ago I saw my daughter for the first time… a sad face standing behind metal bars. She looked scared and confused, with an expression that seemed more like an old woman than a young child. I searched her eyes and saw… nothing. No life, no twinkle, no joy. Expecting a referral for months, …Read More

How Adopting A Child With Hemophilia Has Changed Our World

March 2, 2016 Blood Conditions, hemophilia, March 2016 Feature - Blood Conditions 1 Comments

Hemophilia became part of our world on April 28, 2014 when I opened our agency’s waiting child page and saw our son’s profile. I had heard of this rare bleeding disorder before, but I really had no idea what it meant for day to day life. Actually, I did not know any medical conditions would …Read More

And Babies Make Four: Adopting Two Sons with PKU

March 1, 2016 adopting as first time parents, adopting two at once, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, PKU, virtual twins 4 Comments

At birth, I was diagnosed with PKU (Phenylketonuria). Most people do not know about this metabolic disorder, but all newborns in the US are tested at birth and if diagnosed, a special low-protein diet begins and should be maintained throughout life. With proper treatment, the child will escape the threat of untreated PKU which includes: …Read More

Beyond Adoption: What Advocacy Can Do

December 9, 2015 Advocacy, Blood Conditions, December 2015 Feature - Beyond Adoption, disruption, other ways to care for the orphan, thalassemia 3 Comments

Our precious son, Mac, came to us through the advocating of many and the mission field of No Hands But Ours. But it begins in an unlikely way….it begins with a disruption. A painful, gut-wrenching, heartbreaking disruption. It is actually impossible to tell Mac’s story without first telling about the disruption. I had never considered …Read More

the sea in our blood

March 17, 2015 Blood Conditions, Family Stories, March 2015 Feature - Blood Conditions, thalassemia 1 Comments

When I was very young, I knew that I wanted to adopt a little girl from China. Stories of baby girls being abandoned because of the one-child policy made a strong impact on me. I grew up, got married to a wonderful man, and we spent 9 years having “the longest honeymoon ever,” rarely even …Read More

Adopting a Child with Hemophilia: What I Wish I Had Known

March 7, 2015 Blood Conditions, Family Stories, hemophilia, March 2015 Feature - Blood Conditions 3 Comments

In honor of Hemophilia Awareness Month, I wanted to write a post to help other adoptive parents understand what can be involved in adopting a child with hemophilia. My son, who came home from China in 2013, has severe Hemophilia A (the most common type of hemophilia), which means that his body does not make …Read More

Advocacy and Social Media: What’s not to “like”?

November 17, 2014 Advocacy, Sheryl, thalassemia 1 Comments

Ah, social media. Sometimes I don’t know whether to love it or loath it. But it’s here, and most of use it.  Think about it: how many times have you “liked” a post? How many times have you made a comment? Or even “shared” something you saw that struck you as funny, important or thought-provoking? …Read More

Adopting a Toddler with Hemophilia

September 26, 2014 Family Stories, hemophilia 3 Comments

Our household looks a lot like the average family; a coupe of kids, a beloved pet and constant chaos.  We ever so skillfully (insert sarcasm) navigate pre-school, after school activities and a whole lot of fun.  By all accounts our life is pretty “normal”.   A new addition to our normal has been the management …Read More

Diagnosed… And then Rediagnosed… And Then…

July 15, 2014 Jean, thalassemia 2 Comments

In 2010 we saw an adorable picture of a little girl with a sucker in her mouth! She immediately caught my attention. Her eyes looked straight into mine and they were calling out for a Mommy and a Daddy. I read her short bio and the word cancer was in there. I immediately said to …Read More

Training Wheels: Learning to Live with Severe Hemophilia

June 30, 2014 Blood Conditions, Family Stories, hemophilia 0 Comments

One year ago I was in China meeting my little boy. When I saw his precious picture on the waiting child list in the summer of 2012, I gasped and immediately requested his file. The blurb next to his picture said that he had hemophilia. I didn’t really know much about this condition, and in …Read More

Find My Family: Grace on the Shared List

May 20, 2014 Children Who Wait, girls, special focus, thalassemia 0 Comments

Grace was born September of 2008 and is currently on the shared list. She was found at a few months of age and admitted to the orphanage. Upon admission she was diagnosed with β Mediterranean anemia (beta thalassemia major), macrocephaly, and normal physical and intelligence development. She was placed with a foster family in 2010. …Read More

special need highlight: children with cancer (or in remission)

March 30, 2014 Blood Conditions, cancer, Family Stories, retinoblastoma 4 Comments

We tend to forget that our daughter had cancer. There are reminders, like the huge scar across her belly, but to us she is just our lively, lovable two-year daughter. We know that cancer is a scary word, and it was a scary time that Maya went through, but she survived it and we would …Read More

special need highlight: adopting a child with thalassemia

March 8, 2014 Advocacy, thalassemia 0 Comments

In August 2011, my daughters and I returned to China as part of a mission team working to help orphanages assist their children with special needs. It is no coincidence that my background as a pediatric Occupational Therapist would be needed in the place so close to my heart. I partnered with the incredible organization …Read More

what would you do?

May 15, 2013 congenital siderblastic anemia, Jean 13 Comments

Hubby and I knew God was calling us to bring home a second child, we just didn’t know who that child was… YET. There was a special little girl that had a daunting special need. We didn’t completely understand it but her picture was adorable and being positive thinkers we knew there was a chance …Read More

Our adoption story

October 20, 2012 Blood Conditions, Family Stories, ITP (idiopathic thrombocytopenia purpura), Sensory System, vision issues 5 Comments

Adoption is word that has been said, discussed, and considered in our family since we have been married. Noel and I just recently celebrated 17 years of marriage, and early in our marriage we thought it would be how God would grow our family. We experienced a very trying time of infertility, but God did …Read More

Now What?

September 15, 2012 Diana, tethered cord, thalassemia 3 Comments

Over the last seven years I have been in some stage of the adoption process. Dossier paperwork, waiting for approvals, stalking RQ, following blogs, doing home study visits, etc. You get the picture. Bringing my girls home became a full time job (obsession) for me! Some of us may call it the nesting period while you wait. Regardless of …Read More

The "Im-Perfect" Mama!

July 15, 2012 Diana, tethered cord, thalassemia 8 Comments

I laughed out loud recently when one of my favorite people on the planet commented that someone she met who had been to my blog thought my life looked perfect!!! Trust me when I say this did not offend me. I was too busy wondering if my girlfriend got hurt when she fell off her …Read More

the beauty in Thalassemia

March 15, 2012 Diana, thalassemia 6 Comments

Almost three years ago I had never heard of Thalassemia. The first time I ever saw the word was on the file of a “Special Focus” child living in China. All I knew was that she received quarterly blood transfusions. After a quick call to a friend of mine who is also a nurse I …Read More

Xiao Guo Zi

February 21, 2009 alpha thalassemia, Blood Conditions, Family Stories, thalassemia 0 Comments

By Stacy, Mom to Xiao Guo Zi from China (NSN) with Alpha Thalassemia trait and asthma We waited anxiously for our NSN referral to come in. Waited and Waited. All the others came in, still we waited. My husband went out to the store, and I waited. Finally, when I was certain for some reason …Read More

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