One couple’s journey to adopting HIV-positive children (Part 3 of 3)
I am honored to post the final installment of my interview series with a couple named Kimberly and Jimmy who are adopting HIV-positive children from Ethiopia. If you haven’t read Part 1 or Part 2, see the links above.
Q: What kind of life expectancy do your children have?
The beautiful thing about this question is I don’t have an exact answer for you. At least not in the way that people with HIV/AIDS used to get answers — answers along the lines of “you have a few months.” Or one year. Or a few years. Now, treatment is getting so much better, medical advancements are occurring so rapidly, that the medical community just doesn’t know for sure how to quantify life expectancy.
The best general answer for HIV-positive people on medication is now “near normal lifespan.” Which amazes me. I mean, how often is HIV still thought of as the worst possible disease you could get? And yet, in reality, HIV is not a death sentence but a chronic, manageable disease, one that’s often considered more treatable than Type 1 diabetes. In fact, one recent study projects that a 20-year-old HIV-positive person starting antiretroviral (ARV) therapy today can expect to live, on average, to the age of 69.
Why don’t more people know this?! I’m not sure, except that it’s perhaps a testament to the power of stigma — stigma that needs to be done away with, once and for all.
Q: What kinds of reactions do you get when people hear that you’re adopting HIV-positive children?
I will misappropriate a metaphor here because it describes so well what people’s first reactions typically are: “shock and awe.”
Shock is usually the predominant reaction, as most people simply have no idea that adoption of children with HIV is possible or that anyone would want to do it. The (largely) unspoken question that arises most frequently is “Why would you want to adopt a child who is going to die?” Of course, my husband and I know that with access to medical treatment here in the U.S., our children most likely will not die but live long, relatively healthy lives. Yet the vast majority of people, even educated people, are unaware of the facts about HIV and HIV treatment, and are thus simply stunned by the thought of adopting children with HIV.
Of course, there are those few people whose shock turns nasty. I’ve read plenty of blisteringly awful comments on the internet, but thankfully, we’ve had to deal with very little deliberate vitriol in real life. Because so many people are ignorant about the facts of HIV, most negativity we’ve encountered about adopting HIV-positive children stems simply from ignorance, not from prejudice. For example, “Could your child infect my child in school/at the playground/etc.?” (No. HIV cannot be transmitted through hugging, kissing, touching, sharing toys or objects, etc. Unless our children are doing IV drugs together on the swingset, transmission is simply not possible.) “Won’t you be a burden on the taxpayers?” (No. Before you’re allowed to adopt, parents must document their financial situations in full and prove that their health insurance will cover their children.) And so on. We’re always happy to inform people of the truth because it should alleviate their concerns. However, when people choose not to believe the truth, when stigma overrides fact, evidence, and all the best medical science of the last two decades, it can be frustrating.
Also frustrating, but in a different sort of way, is the “awe” reaction that we often get. In a sense, it’s just as uncomfortable as the shock reaction. Once people hear that we’re adopting children with HIV, most folks then view our adoption as some kind of extraordinary act. Even after we’ve educated them about HIV and how we’re not adopting children that will die in a year, people still react with amazement and a gush of, “Oh, I could never do that!” — as if my husband and I must be made of some stern stuff beyond the average mortal.
This could not be further from the truth! We are ordinary people — not wealthy, not powerful or influential, not even especially pious or exceptionally faithful. (I am no Mother Theresa, I assure you — and my husband would no doubt assure you of that, as well!) Rather, as I see it, we are ordinary people to whom God presented an extraordinary opportunity. And we ran with it.
Which is not to say that we’ve always run the race smoothly and straightly. While I have never doubted our call to adoption, throughout this process I have regularly doubted God about how the details would ever work out! Even when He has given me ample evidence of His faithfulness, I often find myself like the father of the spirit-possessed boy in Mark 9, crying out to Jesus, “I do believe; help my unbelief!”
And, thank God, He always does. Over and over again, He has shown us that we can rest easy in His character and how He wants us to live: fearlessly. “And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him…There is no fear in love. But perfect love drives out fear” (I John 14:16 & 8a).
Q: Are there any final thoughts you’d like to leave us with?
If my husband and I — everyday people who believe, yet too often need help with their unbelief! — have managed to stay the course, why not others?
More than anything else, I would like this interview to be an encouragement to other ordinary believers to pursue the extraordinary opportunities God presents them with. If that’s adopting a child with HIV, wonderful! But even if it’s not, even if your journey has nothing to do with adoption or orphaned children, my prayer is that you would feel encouraged to follow it.
Because I’ve learned that while perfect faithfulness should be what we all aspire to, one-foot-in-front-of-the-other faithfulness is often the best I can give, and thankfully, it’s often enough. You do not need to be extraordinary; you just need to keep going. As I daily remind myself, I may not know where the path I walk is headed, I may be fearful along the way, but I know Who walks beside me. And all roads walked in faithfulness lead to Him.
A huge thanks to Kimberly and Jimmy to sharing their lives with us. Please keep them in your prayers, and if you enjoyed this series, please leave a comment to let them know!
Photo of African AIDS orphans by interplast
One couple’s journey to adopting HIV-positive children (Part 2 of 3)
I am delighted to post Part 2 of my interview series with a couple named Kimberly and Jimmy who are adopting HIV-positive children from Ethiopia. Make sure you’ve already read Part 1 since some of Kimberly’s answers here refer to what she wrote there.
Q: At the end of Part 1 you were saying that when the idea of adopting HIV- positive children first came to mind, you tried to forget about it. What happened next?
I tried to thrust it out of my mind, but I couldn’t. The idea of adopting a child with HIV clung to me. Finally, the sheer persistence of these thoughts lead me to bring up the subject with my husband. I told him I was uncertain about the idea but asked him to pray about it. He agreed (albeit somewhat reluctantly). We prayed about it ourselves for a while before approaching the rest of our family and friends asking them to join us in prayer.
Remember what I spoke about last time, when I said that the idea of adopting an older child really freaked out our friends and family? Well, “hit the fan” does not even begin to describe the reaction when we asked friends and family to pray about us adopting a child with HIV. Suffice it to say that some people were extremely upset. Nevertheless, we persisted in asking them to pray for wisdom and discernment for us, that we would all discern God’s will, no matter what it was. And, to their credit, they did pray for God’s will to be revealed to us all…although surely that wouldn’t include a child with HIV, right?!
After months — at least eight months that we all spent praying, talking, and researching — we realized that God’s will was not for us to adopt a child with HIV…it was for us to adopt two children with HIV. In February, we went back to our adoption agency where our application had been on hold and requested only HIV-positive siblings. We had a referral within a few weeks, and it’s been a blissful, crazy, frustrating, wonderful whirlwind ever since.
All that to say that I truly believe that Essayas was a part of God’s plan for our adoption, though not in the way we had first thought. Now, looking back, I can see how God used him to open our family’s eyes to the beauty and potential of adopting a child that was not “the norm,” not a little girl as young and healthy as possible. Because if we had come straight out of the gate saying, “We’re going to adopt siblings! Older siblings! And one’s a boy! And they both have HIV!” I don’t know that our family would have ever come around. Heck, my husband and I wouldn’t even have considered that kind of situation when we were first exploring adoption. I’m afraid we all would’ve been too paralyzed by fear to use the power, love, and sound minds that God had given us!
But God used Essayas to open our eyes and help us break from our fears. First, it was openness to gender — maybe we could adopt a boy and not just a girl like we’d always thought. Then, maybe, we could adopt an older child. Piece by piece, as we kept praying and seeking God’s plan for our family — even though it was painful seeking! — we could feel God stretching our minds and hearts to accept, and eventually desire, things we had never even conceived of on our own.
And now we are so blessed to be welcoming a precious brother and sister into our family! They are gorgeous and joyful and seem to have such sweet spirits. We can’t wait to meet them and bring them home soon!
And happily, my husband and I are not the only people who can’t wait to meet them. Our entire family and all our close friends have rallied around us in a way that can only be described as miraculous. We knew that disclosure was going to be a big issue for us, but after much prayer and thought, we decided to be completely open with people about the children’s HIV status. And people have been amazingly supportive — not merely tolerant but thoroughly excited to meet these children and play a part in their lives. The support we’ve received has been astounding and humbling and beyond what we could have ever wished for, even in our wildest dreams.
A year ago, when I was sunk in despondency over our loss of Essayas, I wouldn’t even have been able to imagine where God would take us — and whom He would take us to! — in the months that followed. It’s been one of the most emotionally painful years of my life, but suffice it to say that I have learned anew that God’s ways are not my ways, His thoughts are not my thoughts, and He often uses the most unlikely of vessels — 12-year-old boys, for instance! — to display the surpassing greatness of His power. Praise the Lord!
Q: Do you worry about contracting HIV from your children?
No. Despite persistent myths to the contrary, HIV is actually fairly difficult to contract. HIV has never been transferred through casual contact or everyday household interactions. You can share toilets, eating utensils, toys, food, and drinks, with zero worry about transmission.
(For perspective, the risk even through sexual contact is far smaller than people think. A single episode of unprotected vaginal intercourse with an HIV-infected person presents a risk of 1 per 500 to 1000 [0.1 - 0.2%].)
Plus, once our children are on medication, the levels of HIV in their bodies will likely be so low as to be undetectable. On average, only one week after beginning HAART (highly active antiretroviral therapy), 90% of all HIV in the body is gone; within one month, 99% is gone. And as these levels of HIV in the body lower, so, too, does the risk of transmission.
Nevertheless, we intend to follow universal precautions with our children. Though these precautions are overly cautious, we want to teach our children to be careful when handling blood, both for others’ sakes and their own. Most workplaces now require the use of universal precautions, so this is an important life skill, in addition to a precautionary measure.
Q: What about health insurance? Will your kids be covered?
Yes. There are essentially two facets to this question: does insurance cover HIV? And does insurance cover adopted children? First, regarding HIV, if you are on an employer-sponsored group health insurance policy (and we are), your insurance company is required by law to cover HIV. However, individual policies are not always required to cover HIV. If you’re not on a group policy, you’d need to check with your insurance company to see if you’re covered.
As to the second part of the question, in most situations, it’s required that insurance companies cover adopted children in the same way as biological children. There are a few rare exceptions, though, and you need to check with your individual insurance company for details. (For more info, check out this article and this article.)
Q: What are some good resources for people who want to know more about adopting HIV-positive children?
Project HOPEFUL is a good place to start. It’s a nonprofit whose mission is to encourage, educate, and enable parents adopting children with HIV/AIDS. Chances by Choice is another nonprofit with a similar mission. They also features a list of specific waiting children with HIV; the “Angels With HIV” section of Reece’s Rainbow also features bios and photos of waiting children.
Also, the websites Positively Orphaned and Positively Adopted both serve as excellent compendiums of interviews, blogs, websites, news stories, and medical reports related to the adoption of children with HIV.
Most of all, if you feel drawn to the idea of HIV+ adoption but overwhelmed by the enormity of the HIV/AIDS epidemic or by the sheer number of orphaned children throughout the world, let me encourage you not to let your research overwhelm you. As Edward Everett Hale’s words remind us, “I am only one, but I am one. I cannot do everything, but I can do something. What I can do, I should do and, with the help of God, I will do.”
photo of orphaned children by Common Threadz
One couple’s journey to adopting HIV-positive children (Part 1 of 3)
A few weeks ago I met a wonderful couple named Kimberly and Jimmy who are in the process of adopting two HIV-positive children from Ethiopia. I enjoyed talking with them so much that I asked if I could interview them for my blog to share their story with you. The following is the first of a three-part interview, written by Kimberly. It’s a long post but I hope that you will find, as I did, that it is well worth your time to read the whole thing.
Q: Let’s start by talking about your discernment. How did your faith play a role in all this? Did you go into the adoption process intending to adopt HIV-positive children?
No. When we first set out to adopt internationally, the thought of adopting a child with HIV never once occurred to us. (In fact, I don’t think we even knew that adoption of HIV-positive children was possible.) Much the opposite, our very first thoughts about adopting a child were so common that the international adoption world has an acronym for it: AYAHAP. As Young And Healthy As Possible.
That’s still what the majority of adoptive parents end up requesting: a single baby, preferably a girl, as young as possible and with no known health issues. But pretty quickly after God set us on the journey of international adoption, we realized the AYAHAP path was not the path for us.
Q: So how did you go from requesting a single baby girl, as young and healthy as possible, to adopting two siblings, a brother and sister, ages 2 and 6, both HIV-positive?
Strangely enough, it was God working through a 12-year-old boy — a boy whom we’ve never met and likely will never meet — that truly opened our eyes (and hearts) and changed our path.
For the sake of this interview, I’ll call this boy “Essayas.” That’s not his real name, but it’s a most appropriate substitute. In Amharic (the main language of Ethiopia), the name “Essayas” means “God’s helper.”
So we’ll get to “God’s helper” in a moment. But first, God chose to speak to me directly.
At the beginning of 2008, I had an epiphany. I don’t know any way to describe it other than that, and I’m grateful that the English language contains the perfect word for it: epiphany, “a sudden, intuitive perception of or insight into the reality or essential meaning of something, usually initiated by some simple, homely, or commonplace occurrence or experience.”
One day last year, I was working at my desk in my home office (a most commonplace occurrence), when I suddenly had a flash of insight — not about my work but about my life. As I was lost in thought, it was as if God gave me an unexpected glimpse of the big picture of my life, of the essential meaning of things. And I knew, abruptly and immediately knew, that international adoption was meant to be a part of our lives, that my husband and I were being called to adopt children.
I realize this might sound bizarre or flaky or just downright unbelievable, but that’s exactly what happened. I can’t think of a single other instance in my life where I’ve had a comparable experience, yet I knew then (and still know) beyond all doubt that we are supposed to pursue international adoption, that it’s a part of God’s plan for our family.
Now, I just had to convince everyone else of this sudden insight! When my husband came home from work that day, I told him about my experience. And though he was very surprised (we were, after all, comfortably childless and completely content with our lives), he agreed to at least think and pray about the possibility. I didn’t say much more about it but just waited and prayed. Soon, after his own share of prayer and thought about the idea, he arrived at the same conclusion.
And then, the adoption adventure began. We began looking into what country to adopt from and quickly felt led to Ethiopia. Then, almost as a default, we assumed that we would adopt a baby girl. That’s what people do when they adopt internationally, right? Adopt a baby girl, especially since she would be our first child. We’d both grown up with sisters; we had a young niece; a baby girl must be the way to go. So we told our family and friends about our decision, and they rejoiced. Everyone was ready to welcome a healthy baby girl into the family.
I began researching voraciously — calling adoption agencies, poring over adoption blogs, reading countless books on adoptive parenting. But the more I researched and the more I prayed, the more I began to question the wisdom of our assumptions about what kind of child to request.
And then Essayas showed up. As I was researching different adoption agencies, I received a waiting child list from one agency. On it was a 12-year-old boy — a healthy child, but a child who was quite a bit older than most kids waiting for adoption. A 12-year-old boy? Not a girl? Not a baby? He wasn’t anything like the child we’d first planned on, but his biography was compelling. And the more we thought about it, the more Essayas seemed like he just might be the perfect fit for our family.
But first, we wanted to pray about it, and naturally, we asked our family members and friends to pray with us, as well.
And that’s when…well, I don’t know a much nicer or more accurate way to say it than “everything hit the fan.” Some people were scared of us adopting a boy. Others were scared at the thought of us adopting an older child. Virtually no one supported us, and everyone was vocal about it. Yet, to their credit, they all agreed to pray for us, to pray that God’s will would be done, whatever that was…though surely it couldn’t be a 12-year-old boy, could it?
So we all began praying about Essayas (some more grudgingly than others!), and in the meantime, my husband and I fought for this child. We advocated for him. I even tracked down other adoptive parents who had actually spent time with Essayas in Ethiopia. And, as it turned out, Essayas was universally loved, a wonderful kid. More than half of the adoptive families who had met him wanted to adopt him themselves but couldn’t for various reasons. And the more we argued for Essayas’ right to be a member of our family, the more we felt like he was a member of the family. He had been waiting for a family for months. Surely that months-long wait must be because he was meant for our family.
So we made our decision to adopt him. And miraculously, by then our family and friends had come around, too. God spoke to them, in one instance quite literally, and the message was always the same: do not fear. “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” (2 Timothy 1:7) We all marveled at God’s goodness in revealing Himself this way. And we rejoiced that Essayas, the 12-year-old boy who, according to one adoptive mother who had met him, “really, really, really wants to have a mom and dad…a family to love him,” would soon have a family.
But as it turned out, that family wouldn’t be us. Essayas had been on a waiting child list for months. We had been praying about him for weeks. And the day before we turned all our adoption paperwork in (we’d had to wait an extra week to get a doctor’s letter because my doctor had suddenly gone out of state), another family stepped forward to adopt him. All our praying and pleading, all the strife and heartache had amounted to nothing. We’d missed out on Essayas, the child we’d fought for, by a matter of hours.
Q: That must have been so difficult. How did you react?
I’d like to tell you that I reacted stoically, that I meekly took it as a sign of God’s will and moved forward with our adoption with grace. But I didn’t. Both my husband and I were completely devastated. We could not understand why God would put Essayas on our hearts so strongly, why God would have us advocate for this child so much, to the point of seriously endangering our relationships with friends and family members, only to have it all amount to nothing.
As I wrote to one friend at the time, “While I am not typically a very emotional sort of person, I have just been bowled over with grief by this. It seems strange, I know, to become so attached to a child you’ve never met, but the sense of loss has been overwhelming and crushing…Even though I know God has called us to adopt, I am tempted to turn away from the whole thing — at the moment, it just seems like an exercise in despair.”
And it was flooded with that sense of despair that one night I called out to God for what seemed like the millionth time. “God, there has to be some purpose to this! All we’ve done is what you asked us to do. Please let us see that you have some purpose behind this suffering.” It was a couple weeks after our adoption of Essayas had fallen through, and I had been at home, crying yet again. As I sent up this angry plea to God, I remember feeling like it was bouncing off my bedroom ceiling, drifting back at me like all the other angry pleas I’d sent up before. Sighing, I gave up on prayer and returned to the book I’d just started reading to distract myself. The book was called There Is No Me Without You.
Those of you who have read There is No Me Without You can probably guess where my story is going. But for those who haven’t, please let me explain. There Is No Me Without You is a nonfiction book written by a lady named Melissa Fay Greene, describing the HIV/AIDS epidemic in Ethiopia. Like most people who decide to adopt from Ethiopia, I had started reading the book to learn more about the country of Ethiopia and why so many children are available for adoption there. As I’d already found out, when you adopt from Ethiopia, HIV/AIDS is almost inevitably part of the adoption equation.
So I knew what the book was about before I began reading it. Yet what I did not expect, and what this book reminded me of, was the idea that children with HIV can be adopted. By that point, I’d run across a few vague murmurings of such a concept. But, in my moment of despair, when I’d asked God for clarity and purpose in the midst of heartache, I was struck anew by the thought. People adopt children with HIV?
Lest you think that I stumbled across this idea and clung to it in my hopelessness, let me assure you I did no such thing! In fact, immediately after the thought occurred to me — I wonder if our adoption of Essayas fell through because we’re supposed to adopt a child who is HIV positive? — I thrust it out of my mind. Mere emotionalism, the pragmatic part of me argued. This idea probably occurred to me because I’m grasping at straws, looking for meaning anywhere. So I promptly tried to forget it and move on.
When Less is More: Finding Inspiration in Severe Disability
I recently became familiar with the story of Jason and Angie Berger, whose daughter Sunni (pronounced “Sunny”) was born with a disorder causing her to be severely disabled. I was so touched by their story that I asked if I could do an interview with them. I hope that you find their answers as inspiring and thought-provoking as I have.
Q: Tell us a little bit about your daughter, Sunni.
She has Mitochondrial Disease, an energy disorder affecting her at a cellular level. She has stalled at less than one year of development, cognitively and physically. This means she is unable to sit up on her own or bring food or drink to her mouth. She is blind, diabetic, and suffers from seizures that are kept under control with medication.
She has no real means of communication, although we have learned to decipher her different cries or vocalizations. Until recently, she suffered from bouts of severe pain, as is common with other children having this disorder. We were in and out of the ER every two to four months trying to isolate a cause. It appears to be due mainly to general neurological pain and to gastrointestinal pain due to very slow “motility” (digestion) and frequent constipation. A local pain specialist has been able to help us reduce the intensity of these episodes.
On the other hand, she is a beautiful child with her angelic face and striking blue eyes. She often looks skyward in the pose of a medieval saint. Sometimes, for no apparent reason, she giggles and laughs with glee. It is pure, unadulterated joy!
Q: Give us a glimpse into your daily life. What are some of the challenges you face as a result of Sunni’s medical condition?
We rely heavily on our Personal Care Attendant/Nanny, Melissa, who has been with us for over 4 years. She takes excellent care of both girls, along with Angie, who works three days per week. I work full time, but mostly from home, which allows me to take breaks to play with the kids and help Melissa from time to time.
Sunni requires continuous care, as she is unable to do even the most simple thing for herself. We constantly battle constipation, and keep a running “Sunni Poop Log.” She is classified as a brittle diabetic with blood glucose ranging from 30 to 600+. We have a pump now so that helps. As Sunni grows older, it becomes more difficult to bring her along in every situation. She can cry or laugh and carry on very loudly, which can be very disruptive, depending on time and place. Frankly, we end up doing a lot of “tag team” parenting. This has the effect of separating us so that we can run errands without having to bring Sunni and all of her gear, or spend time with our other daughter, Ava, in situations where we can’t leave her alone.
We have a volunteer one night each week who takes care of her while we spend special time with Ava. Sunni goes to school every day at one of the best school districts in the country for special ed. Not long ago, and today in some areas of the country, she would have been institutionalized, or at the least not be included in these programs, due to her low functional state. She receives various kinds of therapy and interaction with other kids. Although her actual interaction is limited, she just loves hearing the sounds of other kids playing. She has also become a distinct favorite among her teachers. We hope that this will plant seeds in their hearts as well.
Q: You mentioned in an email that you used to be staunchly pro-choice, but that after you had Sunni you became pro-life. Tell us about that process.
So dedicated to the pro-choice cause, that as a Senior in high school and freshman in college, I and a friend vandalized a “Choose Life” bill board out on the interstate that had been sponsored by the Knights of Columbus. We attacked the thing three times, as they kept putting it back up.
This attitude continued for years, despite growing more conservative politically. I was active in the local Republican Party and spoke out against the “abortion litmus test.” Angie was liberal enough to have voted for Al Gore in 2000. Since that time, she has become much more conservative and active in local politics. The best way I can explain it is this: Our dear little girl is probably one of the best arguments for abortion available. She is completely dependent, with a low quality of life that represents a tremendous burden to her parents and society in general. We were fortunate to have received a small revelation of sorts. It became clear that she was a powerful witness to the beauty of life, and certainly didn’t deserve to die. If she should not be aborted, then to argue for killing a beautiful, healthy child is a monstrosity.
When asked how he created such stunning works of art, a famous sculptor once said that he instills in his mind a clear image of the form and then removes everything that is not a part of it. In a way, God has shorn from Sunni nearly all of the adornments that would be considered part of a basic human life. She cannot act on her own, communicate, or possibly understand even simple concepts. She is left as a nearly pure example of human life without anything to distract us from its elegant beauty.
My wife and I both ended up converting to Catholicism. We could no longer stay in the Lutheran church, because they did not stand out against abortion. When you make the decision to leave the mainline Protestant churches behind, you are left with the two major, pro-life groups: Roman Catholic and Protestant Evangelical. I had been part of an Evangelical church (Assembly of God) in my youth, with the laying of hands, speaking of tongues, gifts of the Spirit, etc. It has become clear to us that the “born again” churches can offer no guarantee that they will not drift in the same direction as the mainline Protestants. I honestly don’t know what they will believe in another 20-30 years. There is no authority or hierarchy that is empowered to conserve the truth.
Another thing that attracted me to the Catholic Church was the rigor of its thinking. Writers like G.K. Chesterton and Fr. John Neuhaus really helped me along the road. Catholics aren’t simply submitting themselves to an all powerful, out of touch Pope with a list of antiquated rules. There are not only highly developed reasons for everything they believe, but they fit together into this seamless garment. I’ll have to admit that my view of Catholics wasn’t very high to begin with.
Q: There is an argument out there that sometimes abortion is the best thing to do for unborn children who are diagnosed with serious physical disabilities, on the grounds that it would save them suffering. What would you say to that?
In objective terms, yes, it would save a great deal of suffering for us as well as her. Had she been born healthy, there is much we would not have learned. Some of what it has revealed has been awesome, some of it ugly. Regardless, this suffering is redemptive.
It has already lead us to the Catholic Church, the one institution that would reliably fight for her right to life. Sunni, and the way we care for her, is a witness to others. I sense in people a revulsion to seeing a person, especially a child in so damaged a condition. That is a natural reaction, and one that most labor hard to conceal. But it is important to Angie and I that Sunni be seen by others and that we be seen caring for her and enjoying our lives despite the sadness that it can bring.
Q: Unfortunately, our society might look at your daughter and say that she’s a “burden.” Some people might even imagine that your lives are worse for having had her. What would you say to that?
In objective terms, she certainly is a burden, emotionally, physically, financially and so forth. In subjective terms, she is our beautiful child and this is a burden we will carry for as long as we are able.
We are very grateful for the medical assistance, special ed, and other programs we may qualify for in the future. It has opened our eyes to the generosity of our culture. I think our lives would have been easier, and probably more shallow in some ways. I suppose we would have gone on to suffer other hardships, but they may not have brought us closer to God or caused us to ask the questions that we have.
Q: What would you say to any parents out there who have recently received a grave medical diagnosis for their child and are feeling scared about what the future might hold?
That this child will bring you closer to the mystery of life; that he or she can bring to you a deeper joy. If they were Christian, I would point out that this regard for human life, even damaged or limited, is what set early Christians apart from the pagans that came before them. In the more enlightened parts of the world, children like Sunni may be aborted or simply allowed to die in the hospital.
Q: Would you choose to have a child like Sunni?
I have a hard time answering this truthfully.
You may remember when Christopher Reeve became paralyzed, and word came out from his publicist within the matter of a couple weeks that said, basically, that this crippling incident was a great gift, that it taught him so much, and that he looked forward to whatever the future had to hold. I was skeptical when I heard this. Just once, you’d like to hear someone say, “This is obviously the worst thing that I could have imagined, I’m angry at God, and I wish I were dead.” That’s something we can all empathize with.
Hopefully, I’ll come to feel, deep down, the same way that I’ve been writing about it. No, I’d never willingly subject myself, my wife, or other child to the hardships that we’ve seen. I wouldn’t wish this on my worst enemy. But it happened, there’s a reason it happened, and our job now is to do the best we can to live it out and let it be a blessing to our family and others.
I want to thank the Berger family again for sharing their thoughts with us. I pray that their story will be a blessing to others, and please keep them in your prayers as well.