October 20, 2008 Family Stories, HepB+, Infectious, Lifeline 0 Comments

by Lisa, mom to Grace from China who is HepB+

My goodness. Where to begin. My husband and I were perfectly content with our life and the way our average sized family filled out our average sized home and average sized vehicle….life was sort of just bouncing along and then, there in my contented state, my lulled, rather stagnant state, I began to hear the voice of God whispering to my heart…niggling away at my content and making me question.

My good friend had adopted from China recently and after hearing about the plight of so many orphans in the world, I wondered how I could sit here, in my comfy house, in my comfy life, and ignore what was going on with all these little children. It was hard for me to discern whether God just wanted to pull me out of my bubble and open up my eyes to the needs of His children, or if He was actually pulling me all the way to an orphanage in China to bring one of those children home to be my child. Eventually, both my husband and I became convinced that God had a daughter for us in China. But which one? I felt that He was especially pulling my heart to the little ones with special needs.

I am not a person comfortable or familiar with special needs. I generally am a scaredy-cat and like things to be tidy, and neat, and clean and pretty. I don’t venture too far out of my comfort zone too often. But the idea that so many people would be drawn to the healthy, tiny babies, leaving so many sweet ones overlooked because of supposed imperfections or illnesses absolutely broke my heart. I thought about how it must feel for the older children to see the babies leave time and again, while they remained. I thought about how each time they got gussied up to take a picture, how they must have wondered about the families that would see that picture and hoped for just one to choose them. I thought about my own three, healthy biological kids and how God had blessed our family with so much. We had an abundance of everything in comparison to these special needs orphans, and because of my husband’s military service, we would have health care to cover whatever medical needs they would have. It was never a question for me or for John whether we would go the special needs route…we knew that without a doubt, we would. And I must confess that I felt a certain comfort in getting to see the children’s file and put a face to the file’s information. John felt at the time that he would recognize his daughter when he saw her, and as it turned out, that is how it happened. I had shown him many little children’s files and he would always say, “Nope. She’s beautiful. Looks sweet. But she’s not our daughter.” I don’t know how he had that assurance. I could have brought so many different children home…but when he saw Gracie’s picture, he knew. He just said, “That’s her. That’s our baby.” Maybe that seems ridiculous or shallow to some people, but to John, he had to feel that connection. Hear that assurance from God that this was his daughter.

Gracie’s special need was Hepatitis B. This was something that we felt entirely comfortable with. We had marked on our agency’s special needs checklist what we considered pretty minor special needs. My girlfriend teases me that we were only interested in the “invisible special needs”, or the ones that would be easily corrected. The thing I am learning is that what is “invisible” or “easily corrected” is all relative. Cleft Lip and Palate seemed far too complicated for our family…hearing or vision impairment implied to us that the child would need stability and a military family is anything but stable…we are constantly on the move….so I wrote down that we were open to needs like “Missing fingers or toes”, “heart defects”, “Hepatitis B”, birthmarks…things that most Americans wouldn’t even consider special needs. Once we delved into the process, I started to realize that the very needs that I felt were too complicated didn’t frighten other families at all, although a child would hepatitis B was really a scary prospect for them. It’s amazing to me the way God pulls us each to our child so perfectly.

Since we’ve come home, we’ve discovered that Gracie’s special needs didn’t stop at Hep B. In fact, of all her issues, Hep B has affected our life the least. We visit her Pediatric Hepatologist twice a year for tests to monitor her liver health, but she is healthy, healthy, healthy now. He feels confident that eventually, kids like Grace will be able to be treated successfully and clear the virus. Only one in four kids with her condition actually ever require treatment, so we’re hoping that she is one of the three that don’t. Many parents are very secretive about Hep B and not sharing their child’s condition with anyone…we’ve never felt comfortable with that kind of secrecy. I felt that the very reason there was so much fear associated with Hep B was due to misinformation and people not being willing to share about the condition. We’ve never been met with any sort of hostility or isolation toward Gracie or our family and everyone in our community has been incredibly supportive and the compassion and love poured out on Gracie so abundant. We always share with her caregivers, schools, our church, or friends who have close contact with Gracie about her Hep B status and it has really been a non-issue for us. Because so many people are vaccinated against it, no one is in real danger of contracting it, but we’ve felt that it was only kind to inform people so that they would take that extra step to use the universal precautions that all of us should be using anyway. We have found that educating others about Hep B has taken fear out of the equation and if anything, raised awareness about the need for a cure.

Doctors discovered in the tests that followed her arrival home that Gracie also has a couple blood disorders that she probably inherited from her mother…G6PD Deficiency and a Platelet disorder that makes it hard for her blood to clot. Neither of them is serious, but they can be inconvenient since it means she has frequent nose bleeds and we have to be careful about what medications she takes. She also has to wear braces on her feet, and that might last a long, long time. She’s in speech therapy, and that will probably not last that long at all. I have to say that by the time we found out about these different issues, we were so in love with Grace that none of them mattered to us, and even if we had known about them, we would never have hesitated to adopt her. Any child we would be blessed to raise comes with a whole host of unknowns…they may be healthy today, but what about tomorrow? They each have their own little list of surprises. And Gracie’s sweet, loving, and hilarious personality has added so much joy and life to our home…we cannot imagine life without her.

I hope that our story will only encourage others to pursue special needs adoption. We don’t see Gracie as our daughter with special needs or our daughter from China or our adopted daughter. She is simply our Grace, whom we love more than we can say.

Leave a Reply

Your email address will not be published.

© 2022 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.