The Rest of the Story

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The Smith Family
Pear Orchard Presbyterian Church
Ridgeland MS

 

Jesus tells us in his Sermon on the Mount that the poor in spirit will inherit the kingdom of heaven because they recognize their need of God’s help spiritually. Jennifer and Chad and their children, Amelia and Benjamin live out the beautiful truth of God’s sufficiency in weakness. Read on and enjoy the richness and the power of the Gospel as it works in the lives of their family.

MNA SNM: Please share with us a little bit about your story.

Chad: Our son, Benjamin Davis Smith II, was named after my grandfather who was a life-long pastor all over rural Arkansas. Ben will be 4 in July and he is our second child. We have another daughter named Amelia who is 6. Ben was born during the summer before my last year of seminary. The pregnancy seemed normal and we had no hint of any problems until he was born. He stayed in the NICU for 14 days and then we finally got to take him home, but still with a lot of uncertainty. He wouldn't eat, and what he did eat he would throw up. If he wasn't sleeping he was wailing. I've never seen a baby get so angry. He didn't want to be held or touched. At first doctors thought he had cystic fibrosis, but to everyone's surprise, the test came back negative. After 4 months of these complications, one of our doctors finally admitted him to the hospital again for a week's worth of tests. He got an MRI and that is when we started to get some answers. The MRI indicated that part of his brain never formed. He was born without his corpus callosum. So, we had one diagnosis: Agenesis of the Corpus Callosum. The corpus callosum is usually formed around the same time the fetus' eye sight is as well, and sometimes these things can be linked, so after the results of the MRI came back, they immediately sent us to the hospital's ophthalmologist. Sure enough, Ben suffered from blindness as well - Optic Nerve Hypoplasia

MNA SNM: What was it like when you were coming to terms with your own/family member’s disability? What was your first response? What was your greatest fear?

Chad: My first response was one of sheer helplessness. I just felt numb. I really didn't have any other emotions at first, and in hindsight, it is clear that this is when our Heavenly Father began to make His presence felt like never before. He replaced the numbness with a strange sense of safety and faith. When you have no emotions or strength or faith to give, God fills the void with His own strength and faith for you. It seemed as though the Lord was just giving us the ability to put one foot in front of the other. At least that was our experience.

Certainly, my greatest fear was just that we couldn't handle this. I honestly did not think we were equipped, and that is precisely when the Lord showed up. We had always assented to the biblical idea that when we are weak, God is strong; we just hadn't really ever lived it until now.

 

MNA SNM: What was your greatest challenge at first? What is your greatest ongoing challenge? Practically? Spiritually? Emotionally?

Chad: The greatest practical challenges fell in to the lap of my sweet wife. I was on staff of a church about 30 miles south of the seminary and commuted every day, leaving my wife to handling the kids, bringing Ben to doctor's and therapy appointments just about every day of the week. The church was in a small town in Mississippi, about 45 minutes away from the hospital. I was being interviewed for potential calls, while handling a grueling full-time load with seminary and church duties. Needless to say, this was a very, very hard year.

Our greatest spiritual challenge, one which continues, however we have received growth; is just loving a child that does not respond or engage the way other children do. He is a constant reminder that Jesus' love for us has absolutely nothing to do with our ability to respond and engage with Him. I know this in my head, and the Holy Spirit is still working it down to my heart.

MNA SNM: What is the most difficult to accept? How are you processing that?

Chad: I think still the most difficult thing to accept for me is the notion that my son may never be able to give me a hug. The Holy Spirit however is using this to more strategically apply the Gospel. He is showing us a deeper beauty through our son that we otherwise would have never noticed. We are most human when we are loving and helping the helpless. We get to experience this in our own home every day. He is showing us, in how our son blesses other people, His goodness and grace. He is showing us that suffering itself is a grace. My son may never be able to show us affection the way 'typical' children do, but I think the Lord intends to reveal His affection and His heart to us, which thankfully is not very typical for this world either, and He is already doing it. He is even showing me that my son is a person made in the glorious image of God, just as much as anyone. I do not do a very good job of loving my son, and many days my greatest consolation is knowing that my son is in the hands of a much better Father.

 

MNA SNM: In what areas of your life do you find that you need the most assistance?

Jennifer: Soon after Benjamin was born people started to try to encourage us with platitudes ranging from saying things like, “I’m sure he’ll be ok.” to “he’ll be the child who breaks all the rules and surprises all the doctors with his progress.” As quickly as we started hearing these things I realized the insufficiency of anything but the Word of God and how it addressed the pain we were going through. At first the assistance we needed was strong Biblical teaching, which God gave us through our pastor, friends, and Steph’s book, Same Lake, Different Boat.

The support our special needs committee provides is invaluable to us. I know that if we have concerns about Benjamin’s placement or needs that we can’t seem to meet we have a team to go to ask for prayer and help with problem solving. Having the system in place to help before problems grow is tremendous.

We are also expecting our third child and will need assistance in new ways when he arrives!

MNA SNM: What do you wish that your church family and others understood better about your life and the life of your family?

Jennifer: There is a daily-ness to disability that even the easier times in our lives right now are significantly harder than without a disabled family member. There are times, although few, that I’ve felt that people expect our lives to be normal unless Ben is in the hospital. For instance, in ministry with college students we often have events that involve food and feeding Benjamin is a time consuming, focused activity. I’m often not able to really have conversations with students as I’m feeding Benjamin. It’s hard to balance living a busy life with meeting Benjamin’s needs.

MNA SNM: How has your local church ushered in the power of the gospel – in word and deed – into your life/the life of your family? How have they supported and encouraged you in practical ways?

Jennifer: Our special needs team has a liaison who checks on him as he takes part in various church activities and she is aware of the things he needs – such as not staying outside in the heat too long – and communicates that with the teachers so that I don’t have to. I appreciate that our church’s special needs team has overseen care of Benjamin during Sunday school that I haven’t had to worry about. He goes to a typical Sunday school class with a youth helper there who helps integrate him into the activities of the morning. He clearly enjoys his class and I don’t have to coordinate the helpers that he requires.

 

MNA SNM: How has your church family supported and encouraged you spiritually?

Jennifer: At first our church family listened to us and allowed us to grieve. Early on I felt like every aspect of my life was intertwined with Benjamin’s disability and they gave me grace to work through the new role God has given me as his mom.

MNA SNM: How are you using the gifts God has given you to serve your church family?

Jennifer: One way is through our church’s special needs ministry. My husband and I are both involved and the Lord is using this ministry to transform the entire church and community.

MNA SNM: How have you seen “the work of God displayed in your life?” through disability?

Jennifer: I’m thankful for the weakness and inadequacy that I feel on a regular basis. I know that the work of God is not displayed in my life when I feel like I can accomplish the things set before me and daily I am confronted with my inability and reminded of His sufficiency.

MNA SNM: What have you and your family learned about God?

Jennifer: Through our struggles with Benjamin we have learned that He is faithful to give us what he requires of us and that He does truly want to bless us through the struggles He gives us. He reminds me that He desires more for our family than I desire for us. He wants nearness and restoration when sometimes I simply want ease and comfort.

MNA SNM: What have you learned about yourself?

Jennifer: At times in our lives God has taken away the things I had been doing to serve Him like working in the home by cooking or cleaning or doing things in the church. When I was stripped of those things God showed me more that He wants nearness to me. I try to make my relationship with my Heavenly Father about what I do, but Jesus has done the work for me and He desires my heart.

MNA SNM: What have you learned about others?

Jennifer: God has taught me to expect to be surprised by his grace through the kindness of others – both friends and strangers. Certainly there are unkind people in the world, but I’ve found that if we are open, the grace that others go out of their way to show you is such a blessing.

MNA SNM: How does the care of the local church free you/your family member up to minister to others?

Jennifer: Our church has been a blessing because I feel like disability is no longer unexpected. I feel like I can invite the families I mingle with regularly through therapies or at the hospital to church and know that they would be made to feel welcome at our church.

MNA SNM: If you could share one message with the Church about the subject of disability, what would it be?

Jennifer: I’d like to share with the church the message that I have to remind myself often – that we are all affected by the fall and “disabled.” No one is whole - we just cover it up better than Benjamin.

 

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