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.

berger1a When Less is More: Finding Inspiration in Severe DisabilityShe 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.

berger quote1 When Less is More: Finding Inspiration in Severe DisabilityWe 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.

berger quote2 When Less is More: Finding Inspiration in Severe DisabilityMy 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?

berger2a When Less is More: Finding Inspiration in Severe DisabilityIn 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?

berger quote3 When Less is More: Finding Inspiration in Severe DisabilityIn 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?

berger quote4 When Less is More: Finding Inspiration in Severe DisabilityI 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.

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Enter the Conversation...

34 Responses to “When Less is More: Finding Inspiration in Severe Disability”
  1. Rebecca says:

    Jennifer,
    Thank-you so much for sharing the story of Sunni and her family.
    They are an inspiration and I will be praying for them!

  2. JoAnna says:

    Thank you so much for this post. Sunni is just precious, and her family is an inspiration.

  3. Anonymous says:

    Just for the record: When Christopher Reeve was in the hospital, right after the accident, he did want to die. It was his wife Dana (who since has died of lung cancer), who said to him, "But you're still YOU!", in spite of all his physical losses. (Her words to him inspired the title of his book, "Still Me").

    It was Dana who encouraged him to live, in spite of his pain and despair. I think it was only with the passage of time that he realized he was glad to still be alive, and that the injury forced him to grow in ways he never would have otherwise.

    Beautiful post, Jennifer. I love Jason's analogy to the sculptor. That's exactly right: We are human not because of what we can do, but simply by virtue of our being.

  4. Michelle says:

    Thanks for posting this story. What an amazing family and an an amazing little girl.

  5. Ginkgo100 says:

    Another word for a "burden" is a "cross." Christ lets us carry these crosses so that we may grow to be more like Him.

    Sunni's story reminds me of the story of baby Faith Hope, born with anencephaly. In layman's terms, she basically had no brain—at least, not the part you think with. Her mom Maya loved her passionately and chronicled each week of her short life (she died at age 3 months) on her blog. I must admit that when I started reading the blog, I felt that same sort of revulsion that Jason says he sees in others when they see Sunni. Intellectually I thought of Faith Hope as a human being, but emotionally I had a way to go. But after becoming a regular reader, Maya's writing and photos changed my heart and I grew to love this little girl. I cried when she passed away.

    A number of trolls—many of them atheists—actually harassed Maya for having Faith Hope. They considered a human with no intellect to be a non-human, a person with a terminal illness to be already terminated, a permanent invalid to be in-valid. Their vitriol went beyond mere disapproval, and I have to say that I don't understand it at all. Surely, in their twisted thinking, loving Faith Hope is not different than loving a pet? But Faith Hope was much more than a pet; she was a beautiful baby and a sweet, innocent person, and Maya has repeatedly said that she was the best thing that ever happened to her.

  6. Anonymous says:

    Jennifer,
    I feel the same way about my son with autism. He has taught me so much! And I've even become more intensly pro-life because of him. Thank you for sharing a wonderful story about a beautiful family.
    Sara

  7. Emily says:

    Thank you so much for this!
    I love hearing stories about families who have children like this–who are so often considered a "burden" to society. Thinking like that just breaks my heart.
    I will certainly be paying for this family!

  8. Sara says:

    Thanks for the interview; they're very inspirational. We have friends with a child w/ mitochondrial disease, too, and they're a beautiful witness to life, as well.

  9. Sarah says:

    Great interview

  10. Courageous Grace says:

    Jennifer,

    Thank you so much for sharing this story, it brought tears to my eyes. I think God gives special kids like these to very special parents for a very important reason which may be different for each situation.

  11. Susan says:

    Another note of thanks for writing this. I found it both inspiring and encouraging. As a parent and aunt to several with special needs (autism), I can echo many of the thoughts that Mr. Berger expressed. While there is a lot of pain in disability, there is a lot to learn as well, about life and love.

  12. Jess says:

    I read this paragraph and related to it so much:

    "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."

    He is very insightful and honest. And Sunni is just beautiful.

  13. Anonymous says:

    Sunni is beautiful. THANK YOU FOR CHOOSING LIFE! I see a mother with her disabled child regularly at our neighborhood pool. I often want to tell her that her child is precious, but do you think that would make her uncomfortable?

    Also, my sister is giving birth to twins in a few weeks. Both girls do not have the organs to live outside the womb. I write this with a heavy heart, yet I have so much joy because God's love is so apparent through this all.

  14. Christina says:

    I cannot begin to understand what profound joy and pain that must come from having a child with such a great degree of disability; however, I always marvel at people that demonstrate that unconditional love that makes me confront what love really is.

    God bless this family, and the many families that face this day-to-day challenge and joy.

  15. Carrie says:

    Thanks for sharing Sunni's story. My 17 year old daughter has cerebral palsy and severe mental retardation. To the anonymous commenter who asked if it would be okay to talk to the mom and disabled child that she sees at the local pool, it would be more than okay. I can only speak for myself but when our family goes out into the world I appreciate the people who talk to us and who treat my daughter with respect and kindness. The people that go out of their way to smile at her and say hello help me to ignore those who stare at her or those who recoil from her out stretched hand with disgust. I always prefer that people who have questions ask rather than whisper or point.
    It can be lonely and isolating to care for a child with special needs. Acknowledgment blesses that family.

    God Bless Sunni and her family. They will be in my prayers.

  16. Roxane B. Salonen says:

    Thank you, Jennifer. As you know, our family recently lost a special boy at 11 years of age who exemplified so much of what Sunni exemplifies in her family's lives and in those of others. I am sad that his light is no longer on this earth, but this reflection helped me to appreciate, again, the profound blessing of his time with us. Thank you for finding this voice and sharing it with us!

  17. Laughing Lioness says:

    What a beautiful testimony to God's sovreignty. Thank-you for the interview and to Jason for his transparency and honesty.

  18. Alice says:

    Beautiful post.

  19. Jackie says:

    I am the mother of seven. My third child is severely Down Sydrome with autistic tendencies. She is 14, wears diapers, does not speak. Yet she brings to our family a very special and simple joy of life that I would not trade for anything. I've come to realize that God gave me that girl especially for me so that I could look a little further outside of myself to the eternal. Someday, I'll see her in heaven and she won't be much changed. I, on the other hand, will be so much harder to recognize! She'll look at me, "Mom? Is that you? It IS you!" And we'll hug and laugh and cry at God's amazing goodness.

    This interview is beautiful and I appreciate the Bergers sweet honesty and admire them for their strong stance on pro-life. It is a pivotal issue for our society.

  20. Holly says:

    Thanks so much, Jennifer and Sunni's mom and dad.

    She is beautiful. Thank you for loving her, and for sharing her story.

    I'm a Protestant Evangelical, and I hear what you are saying about the movement as a whole. And yet, I would defend you and her right to life to my last fiber.

    Again, thanks so much. I pray that your love may deepen beyond what you are able to even believe.

  21. Kate J in MN says:

    Thank you, Jen, for this post. And thank you to Jason and Angie for sharing! The Berger family is truly beautiful, and we are blessed to actually know them IRL! Our dear daughter with cri du chat syndrome was born the day before Sunni and Ava. For us, I think the most painful moments we have faced have come from the revulsion of other people, not the disability itself. Last summer at the pool, another little girl saw our child and said loudly to her friend, "Oh, gross!" with no correction or guidance from a nearby parent. Tho this happens occasionally, I am always caught off guard. So, Anonymous at the pool, I think a word of encouragement would help counteract these "ambush" moments. And thank you to everyone here for appreciating LIFE.

  22. Karen says:

    What a powerful testimony of true love and devotion. What a lesson for all of us.

  23. Megan@SortaCrunchy says:

    I am in tears reading this family's story. What an incredible testimony to God's power and mighty work. My heart both breaks for and is uplifted by this beautiful little girl.

    In a Bible study I am in, the teacher talked about allowing God to be conspicuous in our lives. Absolutely, 100% there is no doubt that God is conspicuous in the life of this family and of Sunni.

    Thank you so much, Jenn, for sharing this.

  24. nicole says:

    Berger Family–Thanks so much for your honesty. Too often those in the pro-life movement want to say that it is all joy and gift and blessing to be in a situation such as yours. This leads people to believe they are missing an essential part if they don't automatically feel that way too. Your honesty shows that it is hard to walk that path, but that it can be done. Thanks so much!

  25. Anonymous says:

    Wonderful post. Thank you so much.

    Just for the record, there are several conservative Lutheran synods which have taken strong pro-life stands. You can check out the Wisconsin Synod's position here, http://www.christianliferesources.com/?/library/view.php&articleid=935

  26. elissa says:

    Wow. That's all I can say, wow.

  27. Anonymous says:

    Hello!
    I am a Special Education teacher. I have been teaching for 8 years now. I have had the pleasure of teaching wonderful children (from elementary to middle school level). I am now specializing in kiddos with Autism but I used to teach children with many different kinds of disabilities. I have loved each and every child I have had in my classroom and still remember each one of them. The lessons they have taught me cannot be measured in any way. As I was reading the answers of the parents, I completely agree with them. These children have been placed here in our lives to teach us to love and be happy every day we are healthy. I send a hug to these parents for being so strong and educating people to be more sensitive towards others needs.

    Maria

  28. Mary says:

    Jennifer,
    Thank you for this inspiring interview. As a parent of a severely special needs child myself, I appreciated the Berger's honesty and candor. These children are a true gift from God sent to teach us how to love and be loved in the purest form. We will keep them in our prayers.

  29. JohnTBissell says:

    that kind of Love and shared experience of Love can only flow from the Life of the Trinity. Thanks

  30. Peter and Nancy says:

    Thank you, thank you for sharing your story. You are being wonderful, authentic witnesses for the value God places on each one of us. I especially appreciate you not sugar-coating your daily experiences. We need to be truthful about the difficult parts of life with each other — you're helping make other Christians feel "safe" about sharing real life without over-spiritualizing.

    God bless you as you walk through life with your daughters!
    – Nancy

  31. Renee P says:

    Joni Eareckson Tada, a well known Christian writer, artist, and speaker, was very honest about her initial reaction to her devastating disability (a diving injury left her quadriplegic). She was angry at God, confused that he allowed her to bear such an overwhelming burden, and if I remember correctly, she wished, at times, to die.

    She has been very open about this as she speaks about her injury. But she also speaks about all the unexpected treasures her injury has brought her. Today she says that she wouldn't trade her injury for physical "wholeness" because she would lose the true beauty and spiritual wholeness gifted to her out of her burden. Mind you, she's not saying that she would spurn any ethical medical or technological advances that could help her. Her testimony is that her cross has been her passport to a true walk with Jesus Christ. It has been her terrible, wonderful gift.

    Joni's ministry has touched countless lives in both spiritual and practical ways. She is a living example of the loveliness and dignity of life–ALL human life.

    I think that each one of you who have children with special needs or disabilities are like open books, written with love. Your children are like pure flames of God's mercy and grace. They illuminate the pages of your life, all the struggles, tears, and the victories, so that a lost and unbelieving world can witness the true love of Christ manifest on earth.

    As Christians, we know that medical diagnoses should not determine who is considered human.
    The condition of our bodies does not have anything to do with our 'being', our souls. The idea that the intellect, or the brain matter we have, is the litmus test for our being is patently false. There have been medically documented cases of people who have had severe brain injury or deformity who have functioned at very high levels despite this handicap. (For more information about this, read INTELLIGENT DESIGN by W.Dembski)
    I bring this up because in cases of anencephaly doctors can only state what is physically missing from the brain. Actually, we can't really know what an anencephalic baby experiencing, because there is obviously a component to our "me-ness" that goes far beyond our physical condition. Only Christians completely affirm the dignity and "me-ness" of every individual, regardless of outward appearances. Faith Hope's mom is a shining example of that affirmation.

    As for the trolls who can be so cruel, they remind me of the demons in THE SCREWTAPE LETTERS. At the bottom of all their vitriol and callousness is the truth that torments them eternally: they freely chose to turn away from the Author of Life, which leaves them poised over the abyss of despair and nothingness. Witnessing intentional sacrificial love in the form of a mother or father is like pouring acid into their eyes.

    Atheists and those whose worldview is defined by natural materialism (matter is all there is, all processes, events, and things can only be reduced to matter)go ballistic because stories like Faith Hope's kick their theories right out the window. Rather than actually examine this phenomenon, they divert attention from their dilemma by heaping disdain and making a scene. Their paradigms are too poor to accommodate the realities brought to light by agape love or the fullness of Christian faith. They kick and scream because it takes away their "Precious", just like Gollum in the LORD OF THE RINGS.

    They are to be pitied and prayed for.

  32. sunnyday says:

    Reading this was such a blessing to me. Thank you for sharing it, Jennifer. I think about the difficulties I experience daily from living with a special sister, but when I read about people who meet even more difficult challenges head-on and maintain such a positive and supernatural attitude, it becomes clear that my problems are quite shallow compared to these people.

    Sunni's parents are so inspiring. Thank you for the reminder that everything happens for a reason and that we only have to make the best of it :-)

    Diana

  33. Gretchen P says:

    I have a severely handicapped son as well. It is true that I am much less selfish and shallow about many things.

    Our 4 other children are learning valuable life lessons as well. I’ve embarked on a new path of helping to create a non-profit organization for my son’s rare syndrome (www.pkskids.net). I bring hope to other families.

    God always knows what He is doing, even when we can’t see it. I wouldn’t take Simon’s disability away for anything—-he is a SAINT. He is pure and innocent. He will never do drugs and OD or rape someone or drive a car into a tree. I say that because you take away one set of circumstances and another is waiting there to take its place.

    I love my guy so much. Meet him at http://www.simonpeters.org

    Thanks for sharing the above.

    Gretchen

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