Dear friends,
My husband and I are Americans living and working in the Republic of Armenia since 2008. We have a son, age 5, with normal anatomy (he was born with a heart condition, but had surgery and is now normal in that regard -- long story), and for years we have been trying to adopt a little sister for him. After finally receiving approval from the Armenian government last August, we were permitted to see the list of available children...and it seems all of them have serious mental and/or physical health conditions. It turns out that due to corruption, all the healthy children are on another list, and you have to pay some shady guy $25,000 or more to adopt one of those kids. (We knew there was corruption in the Armenian government, but we didn't realize it went as far as child trafficking...another long story...)
Anyway, there were very few options on the list considering we did not want to adopt a child with anything more than a minor, correctable condition. Then in December 2012 we had the chance to meet and spend some time with a 4 year-old girl -- named Angela, like me -- who is absolutely adorable, intelligent, and just the right age to join our family. She has bilateral PFFD. She walks with a wide, waddling gait, but does not seem to suffer from pain or any related chronic conditions. We took her to get x-rays and exams with a US-trained orthopedic doctor in Yerevan, the capital city (her first x-rays and diagnosis, since the orphanage "doesn't have enough money" to provide such services, even though they recently underwent a thorough renovation, grrrr), and after speaking also with the chief of staff at Shriner's Hospital in Tampa, Florida (where we are from), they both seemed positive that she would be able to live a relatively normal and independent life without surgical treatment of any kind, though the doctor at Shriner's said that double amputation was an option...we are not convinced about that.
Despite the doctors' confidence, we are hesitant about completing the adoption -- we want to know what we're really getting ourselves into. We realize that there are many things we cannot know for certain, but when we came across this community, we thought it would be the best place to ask our questions. So if you're out there, living with this condition, I hope you can take a few minutes to give us some useful feedback based your own experience.
1. Without any surgical treatment, will she develop chronic pain? We notice some posts on here from people who do suffer pain, though they all seemed to have undergone surgery of some kind.
2. We travel a lot, and enjoy exploring new cities on foot or by public transportation. How well will she be able to join us for these activities? Will she need a stroller/wheelchair? We don't mind moving at a slow pace if it means she can walk...or will it still be too exhausting for her?
3. How much assistance will she need in her day-to-day activities? She seems pretty independent, so other than perhaps placing a few stepping-stools around our apartment (which we already do for our son), what modifications might we need to make in our lives in order to accommodate her? I already know clothing will be an issue, but I've always wanted to learn how to sew...
4. We are both teachers at an international school (preK-12), where our son attends kindergarten, and where little Angela would be enrolled in preschool if we decide to adopt her. There are no handicapped children at the school. Because Angela currently lives in an orphanage with other disabled children, she does not see herself as different, and from our interactions with her, she seems to be strong-willed and assertive. Would the transition to our school be terribly traumatic for her? What will her interactions with her peers be like, once she's settled in?
Here are links to some pictures of our dear "Angelita" with our son and with me (in the green sweater) -- we want so much to provide a loving family for her, and an opportunity for a fulfilling life -- we're just not sure if we're cut out for the job.
https://docs.google.com/file/d/0B-uFmzZYTGK-aVpSdlM3S3hDNGc/edit
https://docs.google.com/file/d/0B-uFmzZYTGK-LWVSeDFudjVNVmM/edit
https://docs.google.com/file/d/0B-uFmzZYTGK-T01MTWVIeVkyTG8/edit
https://docs.google.com/file/d/0B-uFmzZYTGK-OG5MT2FFMnVQalU/edit
https://docs.google.com/file/d/0B-uFmzZYTGK-eXB4VldyN1FCWE0/edit
Thanks in advance for your thoughts...
Re: Adoption of a child with BPFFD
She's adorable!
To answer your questions
> 1) pain
Long term? I don't know. I've been told it depends mainly on the hip and weight as an adult.
> 2. We travel a lot, and enjoy exploring new cities on foot or by public transportation. How well will she be able to join us for these activities? Will she need a stroller/wheelchair? We don't mind moving at a slow pace if it means she can walk...or will it still be too exhausting for her?
We travelled with a uni-lateral PFFD girl, no surgery, Class D, foot comes to about her unaffected knee. . We took her up really long, tough, high places. Going slowly with rests at picturesque places worked pretty well. The toughest part was going to countries with squat toilets or moving trains where the bathroom was just a hole in the floor and the locals seemed to urinate on nearly every square spot of floor. What helped for places like that was buying some pee funels. We did not
take a stroller or wheelchair with us, but at some places we would rent a multi-person bicycle, etc. In airports we now
always ask for a wheelchair as it really makes a difference if you get pressed for time and your daughter is just too tired to walk quickly/far and you've got a lot of bags.
> 3. How much assistance will she need in her day-to-day activities?
The bilateral PFFD kids/adults I've met didn't need anything different than other kids, except perhaps step stools to reach higher things.
>4. We are both teachers at an international school (preK-12), where our son attends kindergarten, and where little Angela would be enrolled in preschool if we decide to adopt her. There are no handicapped children at the school. Because Angela currently lives in an orphanage with other disabled children, she does not see herself as different, and from our interactions with her, she seems to be strong-willed and assertive. Would the transition to our school be terribly traumatic for her? What will her interactions with her peers be like, once she's settled in?
Starting her in preK is great because little kids do most of the staring but then get used to it nearly instantly. What
we've found (and been told) is that it is really important for her to have a group of friends who have been with her for a long time and provide a buffer. Be open with the kids and let them ask questions and then after a while they will forget
anything except "she's my friend." We did role-playing with our daughter to help her have answers for any situation that
might come up with staring, mean comments, questions, etc. and to try to differentiate between those who were just
curious and those who were intentially being mean because that's how they felt better about themselves... and it helped give her a ton of confidence.
Thank you so much for your
Thank you so much for your feedback; it is quite encouraging. I hope to hear more from others in the community, but that seems unlikely considering how quiet it seems to be around here.