Friday, March 15, 2019

The process of adoption presents all families with an intensely reflective process of choosing to pursue an adoption of a child in a special needs program.  When preparing for both of our adoptions, completing the “checklist of special needs” was reliably one of the most difficult decision-making processes.  Googling your way to being a specialist in just about every special need imaginable and leveraging every known contact, no matter how remote, with any medical knowledge is an exhausting start. 

We quickly found ourselves well in over our heads and evening conversations often felt like preparations for medical school.  “Did you google Neurofibromatosis?”  “How about Patent ductus arteriosus, is that one correctable?” . . . all portions of conversations not part of the normal birth processes.  As intimidating as understanding the list was, the true challenge we found ourselves facing in each check on the checklist was how to say “no”.  How do we feel comfortable with ourselves saying no to a child, far away, struggling with a special need and an uncertain medical future?  The answer to this is a deeply personal approach that understandably varies greatly from family to family.  Without diving into too many tangential conversations about privilege, finances, medical care, distance from specialists, etc, we tried to simplify our approach to the decision with an initial straight forward assessment.  Is the condition correctable?  This was our initial threshold to considering a special needs child.  We wanted to do more, and ultimately would, but just taking this initial step provided a surprising amount of flexibility in the children who we would be eligible to be matched with.  Immediately cleft lip and clubbed foot came into play, and the adoption pool grew.  Heart murmurs, deformed ears, extra digits. . .and the adoption pool grew.  We felt fortunate to be able to offer solutions to these conditions and knew there would be additional doctors’ appointments and possibly even several surgeries, but these were all conditions we could address and offer our child a “normal” life. 

After several specialist visits to determine just what was going on we received completely unexpected feedback from the doctor. 

We were somewhat surprised to learn that this relatively shallow wade into the special needs list positioned us as being more open than most for a special needs child.   In our first international adoption process we were quickly matched with an 11 month old boy who was diagnosed with a soft palate.  He was slated for a corrective surgery at 1 year old, but it could be deferred until after the adoption.  After some initial research which summarized to, “This likely won’t be any worse than a mild cleft palate”, we quickly worked to finalize the adoption and bring home our little boy.  We fully embraced his needs and quickly put our plan to remedy his condition into place.  After several specialist visits to determine just what was going on we received completely unexpected feedback from the doctor.  “In the US we don’t even tell parents about this at birth.”  WHAT?!?!  “Yeah, we just wait to see if it impacts speech when the child gets older, and tell people then.  Typically there’s no impact at all.” 

Did we dodge a bullet, build good karma, or just have our child checked out and receive good news?  Our perspective probably changed multiple times, but it certainly took the edge off the special needs process and helped break down the uncertainty we had in our approach.  Here we were, parenting, making decisions for our new family, and things were just fine.  We could deal with problems that arose and be grateful for the ones that passed us by.

Fast forward two years and we found ourselves again staring at the Checklist of Special Needs and debating just how much we could do. We were now proven parents comfortable in our ability to raise a child, but accommodations for a special need would now also impact siblings in addition to parents.  We also found ourselves back to the birth parent comparison conundrum.

During the adoption process, it is easy to try and hold yourself to a birth child standard, “If we had a birth child with a severe birth defect, what would we do?”  Reasonably every parent would do whatever they could to support their child and provide the best medical care possible.  But adoption is different in that you are actively making a decision in the process, and by willingly accepting a special needs child, you are greatly increasing your chances of receiving one.  For myself, I had to grant myself permission to recognize the difference and say no to conditions we felt outside our ability to handle or that would be too disruptive to our existing family.  But with our new proven parenting super powers, we also felt better prepared to perhaps handle a condition considered requiring slightly more effort than our son.

In May of 2014 our agency sent around to all families who were awaiting home study approval the pictures and stories of several children with severe medical needs. These were considered very difficult children to place. We opened the email just to look, knowing we would not be able to care adequately for any of these children. We instantly fell in love with a little girl who had been born with severe medical issues and had required surgery within the first days of life. We quickly talked in the middle of our workday and determined it couldn’t hurt to ask for her file and just review it to better understand the medical history.

We emailed our agency and got a reply back saying another family was reviewing her file. If it was determined they would not pursue the baby then our agency would let us know. We assumed we would not hear anything more about her. About a week later we were sent the little girls file. The little girl had a heart condition, kidney disease, issues with her urinary tract and some extra fingers and toes. She had surgeries for all of these things, but otherwise was a happy, healthy 18 month old. We quickly put our medical review plan into place and sent her file to Johns Hopkins to be reviewed by their international adoption pediatrician clinic. The pediatrician came back to us and told us this little girl had one of two syndromes that were very rare. All of her medical issues were part of the syndrome, which is how Johns Hopkins determined what it was. Without genetic testing though we wouldn’t know which one of two possible syndromes it was. One of these syndromes would mean that she has been through the worst and would be medically fine, for the most part, as she grows. The other syndrome would mean a lifetime of medical issues that included, severe kidney disease, blindness and obesity. The geneticist at Johns Hopkins was fairly confident this was the lesser of the two syndromes, but she couldn’t tell for sure without the testing.

That was a lot to take in. This was going to be a leap of faith if we determined to move forward.

That was a lot to take in. This was going to be a leap of faith if we determined to move forward. If we decided to adopt this baby we would not know for sure which syndrome she had until we got her home and tested…we would have to be prepared and ready for the worst. We immediately did some research on the two syndromes and found the two doctors in the world who run clinics for all of these patients. One is in Wisconsin and one is in England. We sent an email at midnight to the doctor in Wisconsin and sent him the medical files we had from China and told him what Johns Hopkins had said. He replied back within 45 minutes and said he wanted to talk to us the next day, but that he was fairly confident it was the lesser of the two syndromes.

We spoke to the doctor the next day and that night had a long conversation about what we would do. Neither of us could believe we were actually considering moving forward with a child who could potentially have so many medical needs. This was a huge decision….but we leapt. We decided to move forward, hoping the doctors were right that this would be the lesser of the two syndromes, but knowing that we have to be okay if it is not.

We traveled to China in December of 2014 and brought home our now 6 year old, Cecily. Cecily is strong, confident, intelligent and very independent. Cecily also has the worse of the two syndromes. She is followed yearly by nine different specialists. She is losing her sight. While she genetically has the syndrome with the long term medical needs, she does not actually present medically as a typical patient with her syndrome. She is actually much healthier than most. She seems to be an anomaly and since her syndrome is so rare, she is being followed by several doctors who are hoping she will be a link medically in further understanding the syndrome. By all accounts Cecily is a normal 6 year old, but as she grows we know the loss of her sight will be difficult to grapple with. Probably for us all. We though, cannot imagine life without her. What made us take the leap? What would life be like if we hadn’t? We leapt not truly knowing what the outcome would be, but we had faith it would land us where we should be.

We believe Cecily was always supposed to be our child. Cecily was a name Katie had picked out for her future daughter when she was just a little girl. The name was from a lesser known character in a book by Lucy Maud Montgomery called “Anne of Avonlea”. We had never looked up the meaning of the name, but we loved the name. We both knew very early on in our relationship that Cecily was the first name for any daughter we might have. We decided to adopt Cecily and announced to our family and friends we would be travelling to China to pick her up and let everyone know her name. Then for some reason one night we got curious and looked up what the name Cecily meant…it was crazy to think we’d never done that before. The name Cecily is an English name, the feminine form of Cecil, derived from the Roman clan name Caecilius, which is based on the Latin 'caecus' meaning 'blind'. That night when we read the meaning, before any of the genetic testing was done, we had a hunch where our family was headed.

Throughout our time however , there hasn’t been a single minute we’ve ever rethought our decision. 

Seven years into our family adventure we now have three kids, and having a special needs child is just part of who we are.  We have learned about individualized education plans (IEPs) in the school system, traveled to Wisconsin to see the best doctors for Cecily’s syndrome, and made some minor changes to our home to accommodate low vision.  Throughout our time however, there hasn’t been a single minute we’ve ever rethought our decision.  We push all our children to challenge their limits and encourage them to pursue the life they want to lead, not one society deems is appropriate for them.  Despite her syndrome, Cecily enjoys skiing, parkour, kung fu, swimming, playing piano and many other activities.   As with parenting any child, we constantly learn new things about ourselves and our family, and having a special need in the family simply broadens our perspective and understanding of others.   

We hope that others considering adoption, when faced with the checklist of special needs, will understand the decisions they make can indeed influence the outcome of their process.  But life in general, and especially a life with children will undoubtedly be full of surprises.  Healthy kids can get sick, sick kids can get healthy.  As we stated earlier, the decisions of each family are deeply personal, but remember that your family will continue to change and grow no matter what boxes you do or don’t check.  If you are ready for adoption, then you are ready to embrace whatever the future has in store.


Seth, Katie & Family

To learn more about waiting children in China and India visit our Waiting Children page or call and speak to an adoption specialist today!

Katie, Barker adoptive parent