Two girls, two medical conditions, one family
Photo by Sarah Kane
By Louise Kinross
In 2016, Kerry and David Mills of Richmond, Va., adopted Esther, a six-year-old girl from China who has spina bifida and kidney disease. This past September, they adopted Mia, a 13-year-old from China. She has spina bifida and end-stage renal disease, and depends on dialysis.
The Mills weren’t planning on a second adoption—they also have two boys—but when Kerry read the profile for Mia, ‘So much was the same, and I thought how beautiful would that be if they shared those experiences together? They'd even had some of the same surgeries. I had learned so much about Esther’s medical condition, that I knew what to do for the next one.’
The Mills were able to access a US$5,000 grant toward Mia’s adoption fee from the RAREis Adoption Fund, a partnership between the charity Gift of Adoption and Horizon Therapeutics, which develops medicines for rare diseases. We spoke about the joys and challenges of these adoptions.
BLOOM: How did you decide to adopt a child with a disability?
Kerry Mills: At first we wanted to adopt a child in general, to give a loving home and environment in which a child could grow. When we saw Esther’s medical file from China it seemed overwhelming, but when we had our nephrologist and an international adoption expert read it over, and explain ‘This is what daily life will be like with her,’ we thought ‘Gosh, we can do that.’ I’m a stay-at-home mom, and I could do a lot of the caregiving. It seemed really doable. We were drawn towards one of the older children who had medical needs because they’re often overlooked. A lot of people want a baby or a healthy child to adopt.
BLOOM: What kind of care did Esther get in her orphanage?
Kerry Mills: Not very good care. They treated her symptoms—she had regular fevers and urinary tract infections—but they didn’t know she had kidney disease. It was a surprise, when she came home, to learn that she has a disease that will progress over time, to where her kidneys fail.
BLOOM: Are many children with disabilities placed for adoption in China?
Kerry Mills: Yes, they are. Most of the kids waiting in China have medical or cognitive needs. Parents often don’t have the resources to take care of children with extra needs there.
BLOOM: How did Esther adapt to life in the United States?
Kerry Mills: She was very adaptable and she embraced it fully. We’ve always communicated openly about her homeland and past life, but she embraced American culture. It feels like she’s always been here.
BLOOM: What was the most challenging part of her adoption?
Kerry Mills: At first it was the language barrier. But that only took two to three months, and she learned English quickly. We spent a lot of time going to doctors to get a good baseline on her entire body. Spina bifida affects the bladder, and the bathroom issues were a big learning curve for me, my husband and Esther. She now self-catheterizes, and is able to take care of herself.
BLOOM: Did you connect with other families whose kids had similar issues?
Kerry Mills: I did eventually, but I didn’t know about all the resources that were available till she’d been here for three to four months. The first few months were rough. I was able to get her set up on Medicaid, and that was very helpful as far as finances, and also getting an attendant to come into the house and help out. Esther goes to school now and plays sports and doesn't need a lot of care.
BLOOM: How did her brothers adapt to having a sibling with a disability?
Kerry Mills: You can’t tell by looking at Esther that she has a disability, or that her kidneys are failing her. My boys were in school, so they didn’t really see a lot of the care I did with Esther. Esther can walk. At first she wore braces to keep her feet from turning in, but now she doesn’t need them.
I think my boys felt the slight jealousy they would have felt if I’d brought a baby home from the hospital. All of a sudden this girl is getting all the attention. They get along beautifully now. My oldest son is 16, and he’s a big teddy bear to Esther. And my younger son is 12. He and Esther are only three years apart, so they spend a lot of time together and have some of the same neighbourhood friends.
BLOOM: It must have been a big learning curve to get Esther the services she needs. Where did you find support?
Kerry Mills: We had just moved to a new town, so I didn’t have the biggest support group or set of resources at first, and I felt very alone. But I did have an adoption support group I met with, and that was very helpful for any adoption-related issues. Through the Medicaid program Esther got on a waiver, and to get Medicaid I learned a lot.
BLOOM: How did you learn that Mia was available for adoption?
Kerry Mills: A couple of years after adopting Esther, one of those adoption Facebook groups popped up on my screen, and I saw Mia’s picture. We weren’t intending to adopt, and I thought I’d deleted all of those groups. Curiosity got the best of me, and I enquired about her. I looked at her file and I saw she had spina bifida and kidney disease, and shared many of the same experiences.
BLOOM: You mentioned she was 12, and there was some urgency, because at age 14, children in China are no longer eligible for adoption.
Kerry Mills: The adoption process takes a long time. Mia has stage five kidney disease, so her kidneys no longer work. She has to do dialysis or have a transplant. There was no hope for a transplant for her in China. Our optimal goal was to bring her to America to see if we could get her a transplant. Right now, she goes three days a week to hospital for four hours of dialysis. If she doesn’t do that, she won’t live.
BLOOM: It must be hard for a child at that age to have so much medical intervention.
Kerry Mills: I’ve got a moody teenager who has to go to hospital three times a week. No, the real challenge right now is that the adoption is so fresh and raw, and we’re dealing with a language barrier and dealing with her grief. She’s lost everything she knows—her primary caregiver, her friends, her country and her language. I’m home-schooling her because of her odd dialysis schedules.
Dealing with grief from a teenage perspective is different than in a younger child. We talk to each other using Google Translate, but it does get things wrong. Mia will get angry, or will cry, and it’s more the frustration of dealing with the app. We need to teach her what it’s like to be in a family. We’re still at the very beginning, and we make sure she’s safe and her needs are met. The attachment will come later.
It’s been exhausting, but one of the rewards, in just two months, is that we’ve got her on the transplant list. That's huge. Also, just around the corner, we’re going to learn how to do dialysis at home. Mia and my husband and I will go through training, and then she’ll do a little every day, instead of losing all of Monday, Wednesday and Friday. She’ll feel better overall, and it will be less stressful.
BLOOM: Are there any groups there where your daughters could connect with other Chinese Americans?
Kerry Mills: I have friends who speak Mandarin and we get together with them. And a lot of our doctors speak Mandarin. So we do seek out people who she can have great conversations with. She still talks with her friends and caregivers back home over WeChat. I’m so glad she has that connection.
The girls come from two very different orphanages. Esther’s orphanage was very institutional and not friendly. But Mia’s orphanage was very small and close-knit, and they did things outside the orphanage.
BLOOM: Do the girls have any contact with their birth parents?
Kerry Mills: No, we don’t know anything about them. It’s another form of trauma in their life. Just losing their parents alone is traumatic, and then coming to a new country on top of that. There’s a lot of grief and things will have to be worked through for the rest of their lives. We have a lot of support now. The most supportive people are at our church, our neighbours, and at our children’s hospital.
Mia is going to start with a therapist in a couple of weeks who speaks Mandarin. Next week my husband and I are meeting with a parenting coach who deals with the unique situation of adopting older children.
BLOOM: How do Mia and Esther get along?
Kerry Mills: They share a bedroom. They don’t have too many interests in common, because there’s a four-year age difference. But they’ve always gotten along, and they haven’t argued yet. Both of them are very social and enjoy being with their peers. For Mia, the first month she was here she was so lonely, but once I got her out, and meeting people at a home-schooling co-op, as well as our neighbours, she’s so much happier.
BLOOM: You mentioned that Esther’s kidney disease was a surprise after you brought her home. Were there any surprises along the way with Mia?
Kerry Mills: I’ve been surprised with how awesome her orphanage was, and how they tried to prepare her for family life. They really coached her, and she wanted to be adopted. Once a child there is 10, they have to agree to be adopted—verbally and in a written statement. And they have several opportunities, even after meeting us, where they can change their mind.
BLOOM: Were you on pin and needles after meeting her, in case she said no?
Kerry Mills: We had already talked on the phone, and I’d already established a rapport with her, but it did cross my mind: ‘What if she says no?’ Adoption was something she wanted, so I felt confident.
BLOOM: You said you were home schooling her. That must be a lot of pressure?
Kerry Mills: It’s only as much pressure as I put on myself. When Esther came home, I kept her home for the first year and just taught her English and how to be in a family—to attach and create a bond.
That’s what I’m doing with Mia.
BLOOM: The girls’ disabilities appear invisible. Does that pose any challenges?
Kerry Mills: I’d say not yet, but I know it will at different times. With Esther being in school, I want her to only share things she’s comfortable with. For example, she goes to the nurse’s office to use the bathroom in a private setting, and if someone questions her, she has the choice to answer, or say ‘That’s a private question.’ I don’t want her to feel obligated to give people answers. Part of my job in raising these girls is to help them advocate for themselves—from the perspective of being adopted and having medical issues.
I’m on Facebook groups for adoptive parents, and a hot topic right now is how to give your kids a voice.
For example, Esther came home with a project where she had to make a family shield. They were learning about immigrants. On one side, she had to put in her dad’s ancestors, and on the other, where my ancestors were from. That rubbed me the wrong way.
We talked with her about whether she wanted to put in her birth parents or her adoptive parents. She chose to put me and Dave on there, but then she made an extra section for herself, and put China down. I told her teacher that Esther is an immigrant, and I want to teach her to be proud of where she comes from, and to own and love her story.
BLOOM: Do you have any advice for other parents who are adopting older children with chronic conditions?
Kerry Mills: Take time for yourself, like you did before you had the child. In the midst of all of the doctors' appointments, do something for yourself everyday, so you don't lose sight of who you are. Don't lose your identity in the midst of your child's needs. This is something I work at constantly.
