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.


 


More Than We Ever Expected…

May 18, 2019 by nohandsbutours 4 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 had considered adoption many years before, but being a military family that moved around a lot we decided it was maybe not a good scenario for a child who may need solid ground for a while. So we put it on the back burner.

But in February of 2016, as we completed retirement paperwork for my husband to retire from the Marine Corps, God gently tapped us on the shoulder and reminded us that adoption was still in His plans! After prayer, talks with friends who had adopted, and more prayer, we officially submitted an application in April 2016.

We completed the medical checklist and were open to a good many conditions. The one thing we didn’t feel sure of was taking on a child who would need lifelong care or was severely medically fragile. So in August of 2016, when we were presented with a file of a six year old little girl whose medical condition was albinism, we were almost relieved. This condition didn’t seem too scary. We researched albinism and contacted an IAC doctor to review her file.



For all intents and purposes, she seemed to be fairly healthy. Yes, she had albinism which meant the accompanying low vision, photophobia and nystagmus. We knew the risk of skin conditions. The need we would have for constant sun protection, etc. We were prepared to deal with that and felt comfortable saying Yes. That first photo of our little girl showed this fair little angel, Sitting on the steps of the orphanage with a buzz hair cut and mismatched clothing. Her eyes were sad but she was rocking a smile that melted my heart.

So we said Yes. This was our girl.

In her file and the subsequent updates we received over the next year, it stated that she was slightly delayed and because of her age did not yet attend school. We asked specifically about her eye sight and they sent us a video showing how she could walk across the room and pick up a small apple off the table with ease. It also showed her going down the stairs of the orphanage (much too quick for this momma’s heart I might add!) on her own, using the hand rail. Again, it appeared that her vision was not too horribly bad and she was very mobile!

Maybe we were the ones blinded and only seeing what we wanted to see, but I don’t think so. I have reviewed the three videos over and over again and still barely see the signs: the signs that there was much more to her “delays” then her file stated.

August of 2017 arrived and it was finally time. Time to fly to China and get our precious girl! We received our daughter on day 5 of the trip. We traveled to the Children’s Welfare Center with our travel group where we would all be brought our children. One by one, each family received their child. Each child having a different reaction to being handed over to their new parents and commencing their new life.

At long last it was our turn (our daughter was the last to arrive). In walked our girl with her orphanage director. She was smiling ear to ear and gave us big hugs. She then proceeded to run around the room playing with all the toys. Not a single tear shed from her, no panic or melt down. She was just joyful.

By the time we got back to the hotel, my husband and I both knew there was something “wrong”. Something different. The lack of emotion (other than joy) from her was because she truly had no understanding of what was happening.

She was frenzied and wild. Didn’t seem to understand our gentle commands (which we stated in Mandarin) and it was obvious that even the simplest of tasks (turning on a light switch) were beyond her. Just after lunch we attempted to lay her down for a nap, as was her routine in the orphanage. She laid there literally shaking. Not out of fear, but out of excitement (or adrenaline, we aren’t sure which).

Within the first couple of days, we felt like the rug had been pulled out from under us. This child was not the child we’d read about. She was much more delayed and almost, dare I say, mentally challenged. Even our guide noticed it and asked if we knew ahead of time. When I stated that we did not and had only expected “typical” orphanage delays (she was now 7 years old and had been in the orphanage for 3 ½ years, so we assumed she would function around a 5 year old level), the guide took it upon herself to call the director. The response we got was that the children at that orphanage are not worked with…. essentially they are fed and clothed and that is about it.

My mommy gut said it was more, but we let it go. As shocked and upset as we were, this was our daughter and we were not going to turn our backs on her now! She had already lost one family in her young life, we would not have that happen again. We just prayed, leaned on the support of our fellow travel group and relied on our guides to assist when they could. It was a long 2 ½ weeks in country. I was anxious to get home with her where we could start a routine and start figuring out who our girly really was.



Fast forward to today. She has now been home 19 months. Our sweet girl – who is still to this day just full of joy – is now 9 years old but functions at the level of a 2-3 year old. She does not speak in clear sentences and speaks only in rudimentary two word groupings with lots of babble in between. She has no concept of math or numbers or counting. She can’t read but can recognize the letters of the alphabet! She can’t do zippers, buttons or snaps. She is truly a toddler in a 9 year old’s body.

After numerous medical appointments – and a fabulous developmental pediatrician who agreed that there was more to her delays than just neglect/institutionalization – we were able to get extensive genetic testing done. My momma gut was on target as usual! There indeed was more to her medical story. It turned out that our sweet girl has a rare and fairly “new” genetic neuro developmental disorder called FBXO11 disorder (it doesn’t even have a fun name). It explains so many of her delays and behaviors.

We still do not know what her future holds. Our reality is that she may very likely live with us forever. One of our “fears” when we completed that medical check sheet back in 2016 is now a possibility. But God knew what he was doing. This child has rocked our world, turned it upside down. There are days that bedtime can not come soon enough… but the joy she exudes on a daily basis is just amazing. Everyone who spends even just a few minutes with her proclaims that she has so much joy and is a blessing to be around.

We refer to her as our beautiful little earthquake… she shook our world up in a beautiful way.



Our unexpected was truly unexpected. It rocked us to the core. I wouldn’t change a single thing though. Not a single minute. Take that leap of faith, beyond the unexpected, and trust your Momma gut when things seem amiss. Fight for these beautiful children and the rewards will come back ten fold.

guest post by Jennifer: email || facebook

Bladder Exstrophy: Calming Your Fears

April 15, 2019 by nohandsbutours 4 Comments

In late fall of 2016, my husband I decided to pursue adoption. We mulled over what ages we would consider since we had other children and were “older parents” in our 40s. We decided that the perfect age would be somewhere around 4 years old. (I have now learned that when it comes to matters of the heart, it is best to keep an open mind.)

I spotted a little boy’s face on a waiting child photo list that immediately caught my attention. He was adorable and healthy looking. After staring into his face for a long time, I scrolled past the information about his development and zeroed in on his special need. “Bladder exstrophy” was listed. What was that I wondered? I scrolled back up and read the information listed about him. He had already had surgery for his bladder exstrophy. His birth defect was something I had no experience with and was not one that we had initially checked into for our medical checklist. I started Googling it. It didn’t sound that scary to me, plus he had already had corrective surgery.

My husband and I talked about it. He reminded me of the ages we were considering. This boy was 7 years old now – his picture wasn’t recent. I kept coming back to him though. A voice in my head would always say, “He’s special. He doesn’t belong there.” Which to me meant that he belonged here, in our family.

I told my husband I wanted to look at his file. He agreed. I requested it and we poured over the details along with medical photos. None of it scared me. The nannies had said such kind things about him. He was a gentle boy, a helpful child. He was smart. His file said his special need did not impact his daily life.

We had his file reviewed by the Adoption Medicine Clinic at the University of MN. They agreed that he was an otherwise healthy child and informed us that he would likely need multiple surgeries. They explained that bladder exstrophy is a chronic condition requiring regular follow ups and most likely more surgery in the future. We considered this but decided that we could handle it. He would probably not get the care he really needs as an orphan in China. That turned out to be very accurate.

One of the things I held fast to was that this condition usually happens randomly. The children affected by it are normal in every other way. There is no link between intelligence and BE. They are just normal kids who happen to be born with this condition.

Let me explain a little bit about bladder exstrophy first. As written on chop.edu, “Bladder exstrophy is a complex, rare disorder that occurs early on while a fetus is developing in the womb. As the bladder is developing the abdominal wall does not fully form, leaving the pubic bones separated and the bladder exposed to the outside skin surface through an opening in the lower abdominal wall.”

Each case of bladder exstrophy is different. Sometimes the bowel is also affected, sometimes the genitalia, and other organs may also be affected to varying degrees. For most children the treatment comes in phases. There is the initial closure which involves putting the bladder back inside of the body and bringing the pelvic bones back into place.

Another surgery sometime after the first may correct epispadias. Epispadias is when the opening of the urethra (the tube allowing urine to exit the body from the bladder) appears on either the side or the top of the penis rather than the normal position and is very common for bladder exstrophy patients.

And finally, when the patient and family are ready, another surgery to achieve continence (being able to hold urine) is performed.

For our son, his bladder exstrophy was not treated until he was 4 years old. He lived with his bladder outside of his body for that time. After entering the orphanage, they took him to Beijing to have his closure surgery performed. During this surgery they also did an osteotomy which brought his pelvic bones back into the proper position and performed the epispadias surgery and a hernia repair as well. After he was released back to the orphanage he never returned to Beijing and was given care as best they could locally.

For our son, that meant that he was still incontinent of urine. This turned out to be a blessing though because it meant that there was less of a chance of him having kidney damage from urine backing up, if it was not able to properly drain. The surgery also meant that he was more confident and felt less ashamed of his condition since the surgery gave him a more normal appearance down below. There is a big stigma for kids in China being or appearing different in any way and many kids face ridicule or feel ashamed of their conditions.

For us, his information told us that he would definitely need another surgery in the future. I researched hospitals that specialized in care for bladder exstrophy and consulted with the University of MN regarding our next steps when he came home. I was able to be in touch with advocates who had met our son in China, and they were able to give us useful information on what to expect as well.

During our wait for travel, our son turned 8 years old. When we finally went to China to complete our adoption, we didn’t bring anything special with us other than clothing for him. (You can find anything you need in China – toys, clothes, shoes, and medications.) The day we met him, he came to us with a pack of diapers and a small backpack of gifts from his nannies. He was so small and seemed undernourished but with bright eyes and a gentle disposition. He walked with a limp, so we wondered about how successful his pelvic surgery had been.



Adopting an older child was new for us but it went better than we had prepared ourselves for. We stopped and bought more of the same diapers he was used to at a Walmart there. He took care of things himself and needed no help. He just used the bathroom like everyone else but had to take a change of diaper in with him. I helped him shower just by getting the water turned on and handing him soap, shampoo and the towel. We figured out that he must have had a fistula (an opening between his bladder and outside of his body) because the urine was not coming out of his penis, but around it and his tissue around it was very inflamed. We had planned to take him to the doctor soon after getting home.

For the duration of the trip, he was great but tired easily and occasionally he would stop and sort of curl up, rocking. He always denied pain, but I had my suspicions about something hurting him. We made it home and the next day he spiked a fever. We brought him to the University of MN’s Children’s hospital where we discovered that he had a very large stone in his bladder, along with wire that had come loose from his closure surgery in China. After much research and because of the complications that could arise from removing the stone and dealing with the loose wire in him, we decided it was best to bring him to a surgeon with experience in this same complication.

We treated him for the infection and kept him on an antibiotic while we waited for our surgery day. We flew out to Baltimore to have the surgery at Johns Hopkins where we learned that often the repairs done in China to pull the pelvic bones in place involved the use of wire to anchor the bones together. In the US they don’t use wire. The problem comes when the children grow and the wire either breaks or is pulled off the bones. Our son’s wire migrated into his bladder on one side and irritated the other side enough to cause a fistula through which the urine seeped out and found a new way out of his body. The foreign object in the bladder caused a stone to form around it. By the time we adopted him and he had his surgery, it was the size of a man’s fist. He had lived in pain probably for at least 2 years with the stone building and harboring infection there. He had been treated for the infections in China, but they would just come back, and the pain never went away.

After his surgery and recovery, he was like a new boy. The time we spent in the hospital was excellent for bonding with him and his language exploded. He no longer limped, and his tissues returned to a normal appearance after having been swollen and inflamed for so long. Eventually he realized he could do things like jump off the bed, run up a slide and run full speed with no pain. There is no stopping him now! He’s a completely normal child. He’s so smart and kind. He’s very popular with his classmates and is always being invited to birthday parties. I often forget that he has any kind of special need at all. I have started keeping a few diapers in the trunk of my car for the times we all forget that we must bring them along.



We have discussed the continence surgery with our child, and we see our doctor out in Baltimore annually. His doctor does testing to see how his bladder is growing and to check on everything. Currently, our son isn’t ready to have the surgery and we are respecting his feelings about it. He thinks he will want to go forward with it in about a year or so. There are some people with BE that choose not to do it at all and there are some children who have it done at a much younger age out of necessity. For our boy, his file was right – BE does not impact his daily life. He goes swimming with everyone else, he is doing fantastic in school, he loves fishing and playing X-box with his brother. I was concerned about school and how to handle that, but he uses a private bathroom in the nurse’s office and there are no issues with it. He got his first pet recently, a guinea pig that he named Sweet Pea and he is kind and gentle with her.

My husband and I are considering adopting again and we are open to bladder exstrophy again as well. There may be unknowns for our boy with his future, but there are many certainties as well. He is certainly going to be able to father children, and he certainly has a whole lot to offer this world and everyone who gets to know him. Just as Psalm 139:14 says, he is fearfully and wonderfully made.

You will find a great community of parents and people with bladder exstrophy that you can connect to online and in real life. I am going to include links that I found useful during our research, and now as a parent of a child with bladder exstrophy as well.



Resources:

Association for the Bladder Exstrophy Community
FB Group Bladder Exstrophy Community
FB Group Special Needs Resources
The University of Minnesota’s Adoption Medicine Clinic
FB Group for Parents of Kids with BE
FB Group for People with BE
Excellent Video for Kids with BE

– guest post by Lina

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