Mark Stephenson

Karl, our son, Dylan, was only 3 1/2 weeks old when he passed away. Our grief is different because mostly we wonder what might have been. Thanks for sharing your story. It's good to read your testimony of God's sustaining grace. I would guess that many of us parents are on this journey. 

Anje, thanks for sharing this summary. How powerfull to read these Scripture passages one after another on the priceless value of human life. To your summary of the Scientific Views, we could also add Peter Singer's view, which I commented on in my blog last week. Singer says that personhood begins with self-consciousness which doesn't happen until sometime after a child is born. Therefore, infanticide is also permissible along with abortion, as long as the child is put to death before he or she develops self-consciousness. It's deeply frightening where people go with their ideas if those ideas are unloosed from biblical principles.

Thanks so much to all of you who have shared. Here's a short version of our story.

Bev and I were delighted to be expecting our first child. The pregnancy was going quite well, but then at about 26 weeks, there was a placental abruption. Nicole was born a few hours later, under great stress, and immediately put on a ventilator. At 1 pound 14 ounces, she weighed less than a kilo. During her first stay in the hospital of six and one-half months, she had a severe brain hemmorhage which has resulted in severe intellectual disability and some cerebral palsy, as well as some retinal damage and a great deal of scarring in her lungs. Nicole has been hospitalized many times since then for surgeries, infections, and severe seizures. She is classified as severely multiply impaired. She cannot speak, cannot walk on her own, and cannot engage in most tasks of daily living.

But this recounting of the challenges she has faced only tells part of her story. Nicole faces life with an amazing amount of grace. She tolerates difficulty and pain without self-pity. She maintains an amazingly upbeat perspective on life. She loves to gather with God's people in worship, and hoots and waves during her favorite songs. Unlike most of us, she does amazingly well at being present in the moment without undue longing for the past nor fear for the future. Besides smiling, another way that she has found to connect with people is by gently touching them on the cheek to express connection and thanks. She does this in the evening after her care givers say prayers with her before bed. She loves school, roller coasters, and paging through magazines until her fingers turn black.

Nicole lived with us for her first 18 years, and has lived in a wonderful Christian group home, Harbor House Ministries, since November 2005.

Besides ongoing concerns about her health, one of our biggest concerns is the current turmoil in state and federal budgets and what that might mean for Nicole's care and the care of other people who are the most vulnerable members of our society. I've recently joined a listserv in which people post information about upcoming state and local public forums about medicare and medicaid and lots of other stuff too like current thinking about how best to allocate dollars and provide the least restrictive environments for people with intellectual disabilities. Political stuff is definitely not my area of speciality, but then neither was all the medical stuff that Nicole and others taught us about. We just keep learning and growing, thanks in part to Nicole.

Bev and I have three other typically developing children. Our son Ben's perspective on being the brother of Nicole is recorded in a fine little book Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs.

God used Nicole in my life to lead me from parish ministry to my current ministry as director of disability concerns for the Christian Reformed Church. And God used Nicole to lead Bev into her calling today as a Special Education Teacher.

Hi Grace,

Thanks for coming to the conference last spring and for your question. We've been asking around to find more information about the gift survey you refer to, but have not yet found anyone who remembers. Here are some surveys on the Disability Concerns website (though not exactly what you are looking for): Discerning needs. To care, one must know the needs. Healthy churches will work to determine the unique needs of each person and family in their congregation. Here are three questionnaires which care teams can use: questionnaire for parents of children with a disability, questionnaire for people with disabilities and caregivers, and check list for councils and church leadership.

Perhaps someone else remembers the church that did the survey Grace asks about?

Mark

 

Sara, I like your idea and hope that others do too; I agree that we need to wait on the Lord for this.

Practially speaking, this would be quite easy to do within the Network. It would be a simple matter either of having discussions in the Disability Concerns forum, or of creating a new Discussion Network. A new Discussion Network could even be "hosted" in the same way that the Church Order Discussion Network is hosted by Henry De Moor.

Perhaps one small step would be to remind ourselves, and pastors remind their congregations, over and over again that we are baptized. (I fell far short of this when I was in parish ministry.) I love Martin's Luther's statement in his Larger Catechism (XIII, Part Fourth), "Thus we must regard Baptism and make it profitable to ourselves, that when our sins and conscience oppress us, we strengthen ourselves and take comfort and say: Nevertheless I am baptized; but if I am baptized, it is promised me that I shall be saved and have eternal life, both in soul and body."