Family Stories

At No Hands But Ours, we love family stories. Since our inception in 2008, we’ve featured a wide variety of family stories – and we continue to add new stories regularly. Please use the links in the right sidebar to click through to stories on specific special needs, or you can scroll down this main page to read all our family stories.

If you are home with your child from China, and would like to have your family story featured here, just use this form to let us know.


Living in the Unknown

November 12, 2018 by nohandsbutours 0 Comments

“Sensitive special need. Hypospadias.

That was the listed special need on the precious child when my husband and I first saw the advocacy post. We had different special needs at the forefront of our minds, but something made us pause. Hypospadias was something we knew and understood. Our first son received a surprise diagnosis of hypospadias shortly after birth.

We requested the file. This (what we were seeing) was not that.

Hypospadias is simply a birth defect in which the opening of the urethra is on the underside of the penis instead of at the tip. Hypospadias can vary significantly in terms of severity; there are grades assigned based on how far the opening of the urethra is from the tip of the penis. Grade I is mild with very high surgical success, whereas Grade 4 is the most severe, and typically requires multiple surgeries.

Even taking into consideration the most severe forms of hypospadias, that simple diagnosis could not explain the images included in the file. And so we entered the world of DSDs, or Disorders of Sexual Development. Or, as I like to call it, Differences of Sexual Development.

I dove deep, researched everything I could find on different DSDs that presented similarly to the images in his file. I read every single post on NHBO from other families who had children with these special needs. I contacted every mama I could find and begged them to share their story. But, in the end, it became clear that there was absolutely no way that we would know what we were looking at.

We would simply have to make a decision based on the limited knowledge we had.

He was listed as a male, but we knew that that could change. We had to decide if we could deal with that. If we were open to that. We knew that sexual function could be in question. We had to decide if we could deal with that. If we could parent a child through that. We knew that infertility and even sterility were on the table. We had to decide if we could deal with that. If we could support and guide an adult child in the types of decisions available for growing a family.

Ultimately, we decided that male or female was less important than this child’s identity as a precious child of God, a child who was uniquely created and intentionally made. We said yes, submitted LOI, and six months later we met our son.

I won’t lie; it’s been a complicated journey. Not because our son’s special needs are life threatening. Not because of the maintenance or daily routines of his special needs. Truthfully, our daily life looks not one bit different because of his physical differences.

The hard part has been finding answers and navigating through a world of intense and varying opinions on how to treat (or not treat) these physical differences.

Some people feel very confident that surgery should be completed and as soon as possible to help the child look more typically male or female. Others disagree vehemently saying that surgery, unless medically necessary, should be postponed until the child is old enough to decide.

No matter what, these are weighty choices.

The odds are that waiting children with a DSD-related need will not come home with an exact diagnosis. The file might include a karyotype, indicating if the child has a typical set of chromosomes or not. The file might include some photos. But it might not. With DSDs, it is rarely clear what caused the physical differences, so there can be a lot of unknowns.

Might the gender be incorrectly assigned in China? Yes, that’s a possibility.
Might there be more extensive needs discovered once home, like kidney complications? Yes, that’s a possibility.
Might the child identify differently than the assigned gender and wish to transition at some point? Yes, that’s a possibility.

Saying yes to this need likely looks like saying yes to a slim amount of information, and that can be hard.

For our family, the hardest part has been knowing what to share and with whom. You see, this isn’t a special need with its own hashtag. No #zipperclub or #luckyfin. No #heartwarrior or #morealikethandifferent. And for that reason, the community of others walking the same road can be more difficult to find.

It’s a special need that can isolate your family a little bit.

For all adoptive parents, navigating how much of our kids’ stories to share and who receives the information is hard. This need just adds a bit of an extra layer to that. Sensitive special need indeed.

As we have yet to complete any surgeries while we are still in the diagnostic phase, we have had to choose how to handle church nurseries, daycare teachers, babysitters, and even our own families because the simple truth is our son looks different. We’re constantly walking a tightrope of protecting our son’s story and sharing enough information that those who are partnering with us can adequately provide and care for our son.

I remember reading a post from a mom parenting children who are HIV+. She described it as “the easiest special need ever”. HIV was on our list of special needs because we agreed with that sentiment, but I might argue that we’ve got a contender here. While there have been buckets of doctor appointments, and out-of-state for specialists and DSD clinics, and lots of learning, at this current juncture of parenting a two year old with an unknown DSD, this is surely the easiest special need ever.

The future may or may not get more complex as we make decisions that will impact our son for the rest of his life, but truly, he is just the best. If you can walk into the unknown, and be open to living in the now while preparing for tomorrow, I encourage you to consider hypospadias and other Differences of Sexual Development.

Learn about DSDs at Accord Alliance

– guest post by an anonymous mama

A Million Times Yes

November 10, 2018 by nohandsbutours 2 Comments

“That is a need I could never handle, Lord.”

It all began with a checklist. You know, the dreaded medical needs checklist we all fill out in the beginning of the China adoption process that kickstarts the journey to our child. The very checklist we dwell over, pour research over, stress over, and pray over. If we say no to this particular need, we feel we say no to a particular child. If we say no to that need, we ask if we’re saying no to God. Ya know…that checklist.

Like all prospective adoptive parents we poured over that checklist for months. We narrowed it down neatly to the needs we thought we could handle and would be most comfortable with.

On our neatly checked off checklist there was, of course, the urogenital needs category with hypospadias included. For us, the urological needs category might as well have been handed to us with a big NO stamped right over it. I grew up in a family that was very conservative and very private and modest over private parts, and issues like intersex were a completely taboo subject. The thought of ambiguous genitalia and intersex and surgeries correcting issues down there, as much as I hate to admit it, sent chills up and down my spine.

“That is a need I could never handle, Lord.” I said quite indignantly. I remember the very moment I whispered those awful words aloud. I was in my kitchen standing over the counter with the printed out checklist before my eyes as I saw the words ambiguous genitalia.

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. – Isaiah 55:8

Basically, the urogenital category was the only category we left *completely* blank. We knew the nature of China adoption files and how vague they could be. We knew hypospadias was a potential catch all term for issues such as ambiguous genitalia and intersex conditions. I gave a loud resounding no to it all.

Eventually we submitted the checklist, of course with no uro needs selected. At that point, we were expecting a quick match because we were open to either gender; families who were open to boys with our agency were getting matches within just a few weeks. As time went on, we considered adding needs to our checklist. Time lingered, making our wait feel like an eternity. I’d often ask, “God, is there a need we left unchecked that you needed us to check?” I’d ask that, but never ever had uro issues in mind of course.

A few months rolled by and that much anticipated phone call came! It was our social worker on the other line asking if we’d like to hear more about a file she had for us. I immediately said yes! She then proceeded to share about a sweet toddler boy who had hypospadias. She said she knew it wasn’t checked on our list, but they felt it was something we could consider with how “minor” it was.

I was nervous. I had researched just enough to know there could be more to a need listed as hypospadias. They sent us the file, and everything read pretty well. We sent it over to an international adoption doctor, and he called the next day saying this little boy’s hypospadias was either minor, or even corrected, and he was very hopeful. He even blatantly told me, “I think you should go get him!”

We were excited, accepted his file and rushed in our Letter of Intent.

There were no sensitive photos in the file, and we knew to ask the orphanage to send a couple over to ensure nothing additional was going on. We waited over a week and grew more and more in love with this little boy. One day we saw the sensitive photos zipfile in our inbox. I waited for my husband to get home from work so he could view the photos first. He sat down to open the file, and as he looked he said with an apple-sized-lump in his throat…

“I’m not sure what I’m looking at.. you need to come look at this.” My heart immediately sank to the pit of my stomach. I went over, and the first words that immediately came to mind were ambiguous genitalia and intersex. We sent the photos over to the IA doctor and he responded quite seriously that his genitalia appeared ambiguous and to request further testing as soon as possible.

“Not being able to fully understand God is frustrating, but it is ridiculous for us to think we have the right to limit God to something we are capable of comprehending.” – Francis Chan

At that point, I kept thinking back to how the whole journey had unfolded up to that point. “God.. why?! I told you this was the one thing I couldn’t handle… why?” Honestly, it felt like a cruel joke God was playing on us at the time. That was probably the lowest point in the whole journey, I’m ashamed to admit.

My husband and I left each other alone to think on it for a few days. Then one day I asked, “How are you feeling about this..?” (in a roundabout way of asking if he was contemplating retracting our Letter of Intent and not moving forward for this little boy). He responded, “We can’t leave him there. He’s our son.” I sighed a sigh of relief as I thought those very words as well.

We had already committed to him and loved him, even if we felt a bit scared out of our feeble-human minds. We also knew once other prospective adoptive parents knew all of his needs, they’d likely pass on him. And at that point there was only maybe two other families open to boys with our agency, putting his chances nearly to 0.

Unfortunately I had done enough research on needs to know boys with urogenital needs are some of the hardest to find families for.. heartbreakingly due to prospective adoptive parents just like me who defiantly shake their fists at God with the audacity to tell Him they can’t handle them.

“Everything in all creation responds in obedience to the Creator… until we get to you and me. We have the audacity to look God in the face and say, ‘No.'” – David Platt

We requested testing. Then we actually tried to tell them not to worry about it because we knew the test results could be wrong anyway. We were committed, and they’d have to be redone once home anyway. Most importantly, we didn’t want to put our little guy through any more medical trauma.

We received word they had already gotten testing done. And the test results were hopeful. My Google-Doctor self diagnosed him with severe hypospadias in conjunction with other abnormalities (that are commonly seen with severe hypospadias). But there were still unknowns. He could still be intersex. And we had to prepare for the worst case scenario.

Throughout this phase of the process, the Lord was continuously impressing on my heart that, despite urogenital differences, our son was still fearfully and wonderfully made. When fear and worry tried to overtake my heart, I’d repeat over and over, “He’s fearfully and wonderfully made…”

God was also impressing upon my heart that our reluctance on the need is what also qualified us over others for his need. I’m sure that doesn’t make sense to you.. nor did it me in the beginning. God most often calls the least qualified, and boy did He do that in our case.

“Next time you feel unqualified to be used by God remember this, he tends to recruit from the pit, not the pedestal.” – Jon Acuff

Fast forward a few months and we got our boy. Our first doctor appointment once home was the international adoption clinic. I shared a few concerns and the doctor there gave a quick look at his hypospadias. She looked very concerned and I could tell this was possibly new to her. She said he appeared to have a “blind vaginal pouch”. I had prepared my heart for words like this, but they were still hard to hear. Vaginal kept echoing in the back of my mind. In his first ever written US medical file, she wrote possible intersex. Again, a major blow.. but I knew to not think too much on it because this was not a urologist speaking these words.

A nurse who came to visit to enroll us in a state healthcare program paused while she looked at his referral medical file. She pointed at the word “intersex” and asked, “Did you know… this was wrong with him.. before adopting him?” I could tell she was taken back. I said it was a bit complicated, but we had an idea it was a possibility, but we were waiting for his urology appointment to get a diagnoses.

It broke my heart to hear the words “wrong with him…” but I try to extend grace to people for messy words as I’m a messy-word type person myself. Oh how now I wish I would’ve proclaimed to her the very words that had been repeated in my heart, “No matter what, he is fearfully and wonderfully made..”

Fast forward to his first actual urology and endocrinology appointment. I was incredibly nervous. I was at peace in many ways in my heart, but my mind just couldn’t stop racing with what-ifs. I was praying for the best outcome – which for us was severe hypospadias. The urologist examined him, and looked at his file and asked questions, and the endocrinologist of course had lab tests lined up.

They had a psychologist come in along with a social worker. The atmosphere in the room was very serious, which made me on edge a bit. Add to that, I had a child with medical trauma who trembled and cried at doctor appointments, and it was maybe the most stressful appointment to date. The urologist was fairly hopeful but said we’d need to wait on test results. Again on repeat in my mind and heart, “He is fearfully and wonderfully made.. God doesn’t make mistakes..”

Test results came back and both the uro and endo confirmed a diagnosis of severe hypospadias and ruled out an intersex condition. My heart was relieved of course, but if they had come out with the “worst case” we would have managed. I promise you, even if it was “worst case”, we would have continued to run the race and loved on our sweet boy just the same.

We now have had a couple surgeries which have gone well (outpatient and the healing process wasn’t nearly as bad as I anticipated). He’ll need another surgery down the road, but I’m not worried at all. I sometimes wish I could go back in time and tell that newly in process adoptive mama that I was to not worry so much… and that everything would be fine.

Fear is an absolute liar. He wants to bind and hold us down in fear so that we don’t walk courageously with the Lord. Fear loves comfort zones; he delights when we tell God no. He loves when we allow him to be bigger than our Faith. We could have let fear scare us out of moving forward for our little boy, and I thank God every day we shoved fear aside and leaned on Jesus instead.

We would say yes to our son a million times over.

His kisses on my cheek and I love you Mommy just melt my heart into a puddle. His laughter. His ingenuity. His humor. His joy. The unknowns in the beginning were hard, but hypospadias to us has been a pretty easy need. Most days I don’t even think once about it. He’s a perfectly happy and healthy little boy.

To think of him remaining at his orphanage if we had said no… the thought crushes my inner-most being. While it’s good all adoptive parents acknowledge we are not saviors, we cannot gloss over the cold hard facts of life being spent parentless in an orphanage and lifelong implications of medical/special needs not being met.

Our son’s hypospadias was severe enough that, if his need had gone on uncorrected, he’d never be able to even think about sexual functionality, a healthy marriage, having children, urinating standing up, and more. To some this may seem minor, but I’ve done enough research and studies of men who grew up with even just minor uncorrected hypospadias to know it is a devastating blow to their very foundation of manhood and identity. Our son would have had a very grim future, indeed. It crushes me to think about it.

Since adopting him, I see little boys with urogenital issues listed and advocated for and often passed up. It’s tragic. So many families are missing out on some of the most amazing little boys. Little boys who simply were born with a physical difference down there. Little boys that with the love of parents and family, medical care/surgeries, are just like all other little boys. Little boys who were indeed fearfully and wonderfully made by the same very Creator as you and me.

If you’re currently researching needs, please consider urological needs and specifically hypospadias. I know if we were able to step outside of that fear-owned comfort-zone, as indignantly against urological needs as we were, I know you can take that leap as well.

There is a whole community of urogenital-needs parents also waiting to hold your hand through this journey. But, most of all, God has your hand. And if He leads you to it, He’ll guide and even bless you through it.

“For you formed my inward parts; You wove me in my mother’s womb. I will give thanks to you, for I am fearfully and made.” – Psalms 139:13-14

– guest post by an anonymous mama

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