Welcome to our Series on Suffering. Starting out our series is an interview with Matthew* who graciously shared his story with us back in 2012. He approached this task so thoughtfully, and I was moved by his responses to the point of tears.
I’ve shared before how easy it is to ignore those on the outskirts of our stories. My hope is that through Matthew’s story, we’ll gain tools to help us engage with those we often awkwardly dance around.
*All names have been changed.
Christan: Thank you, Matthew, for agreeing to share your story. Tell us about your family.
Matthew: On a recent road trip, my son, Jonathan, declared, “There is nothing normal about our family.” From afar, maybe we look normal, except for the wheelchair. But the closer you look at what we do each day as a family, the more you’ll see that we don’t operate normally.
My wife and I are 41. We have two children, an average-sized home, and earn a middle class income. I am a teacher, and Kelly is a tutor. We don’t stand out in any way. We look and act really normal.
Our daughter, Claire, has severe cerebral palsy, epilepsy, and intellectual disabilities. She can’t do anything for herself, and yet she wants to be actively involved in life. So we take care of all her needs — everything from dressing to walking to eating. Or we find someone who can… which is a tall order. Our lives revolve around trying to make her life as normal as possible. She wants to read books, but she can’t even hold the book. She wants to dance, but she can’t sit up on her own. She wants to go shopping, wear jewelry, and tell jokes, but she can’t walk or talk. So we do the best we can to help her live the life she wants to live, and it takes the whole family and a village of volunteers to make that happen.
Christan: Tell us more about Claire. I believe she was healthy in the womb, right?
Matthew: Claire was healthy in the womb until the 40th week, and then she had a fetal-maternal hemorrhage and was born via emergency c-section without any vital signs… zero Apgar scores. She was resuscitated after 13 minutes, but the damage was done to the brain. So from the very start, we knew that she would have life-long problems and that our lives would never be the same. In some ways it’s been worse than imagined, and in other ways, she’s more of a blessing than we ever imagined.
Christan: When did you begin to grieve?
Matthew: Our grief was steady on from the start and still exists now. We grieve for her and for us often. We wish for a normal life every day.
Christan: Were you hopeful in the beginning that Claire was only mildly affected by her birth trauma? What reality has unfolded?
Matthew: Kelly always wished for four or five healthy, active kids. Instead she got one very healthy active boy and one severely disabled girl. It’s hard to watch so many families who have healthy kids running in and out of their SUV’s with such ease when it takes us so long and with so much equipment just to get dressed and out the door for anything. It’s hard to see normal families move about so easily. They just tell their kids to get dressed, to get in the car, and it happens. For us, it’s a hundred and one steps that we share to make that happen.
Christan: I know Claire’s had several surgeries.
Matthew: Yeah, those are the worst. She’s had a lot. I can’t even remember all of them, and there will be more ahead. You talk about suffering. Our family suffers when she suffers, and with a surgery it can be months of hard recovery. Cut bones and muscles don’t heal quickly or easily.
Christan: Do you ever blame God?
Matthew: Sure. We know that He is ultimately responsible for our daughter’s disabilities, in the same way that He is responsible for our abilities. We could blame the doctors or Satan, but from the beginning we felt that God was involved in the whole process — from Claire’s near-death in-vitro trauma, to her birth, to her life. He has a plan that is far more difficult than we’d wish on anyone, and we trust there is a greater purpose in it all. But believe me, we’d do anything to heal our daughter and make her fully able. I deeply despise her disabilities, even though I love her to the ends of the earth. Someday, she will be free of all the pain, all the problems, and so will we. I trust that someday, it will make sense and be worth it all.
Christan: Did you ever blame yourselves?
Matthew: Sure. There were a few signs that things were not right, but we went with the protocol, the logic, the medical advice, and waited. Kelly wishes that she’d gone with her gut feeling and went in two days earlier. But hindsight is 20/20. I’m sure the doctor wishes he’s been ultra-conservative and delivered sooner, but again, his logic and protocol said that it wasn’t as big of an emergency as it ended up being. Could it have been avoided? Yes. Was it reasonable to expect the trouble that was brewing? No. Only hindsight is 20/20.
Christan: Has parenting a child with severe disabilities ever threatened your marriage? Has it helped it thrive?
Matthew: Most marriages in which there is a disabled child end in divorce. The rate is about 85%, I’ve heard. I understand why. The mother will pour her whole life into her one child, and the father will lose his wife and gain a tremendous amount of stress. And it’s over. I get it. On the other hand, the 15% who stay together may have some of the strongest bonds. Our marriage has been tested, and it’s been tough, but we’ve leaned on each other in the deepest ways. I think Kelly and I are a strong team. You have to be “all in”. There’s no middle ground. That said, it makes a tough thing like marriage a lot tougher.
Christan: How did the Church help you in your grief? Does the Body of Christ still walk with you twelve years later?
Matthew: The Church helped us in our grief to some extent. We probably should have sought out lay counselors that our church provides and probably should have been more proactive about getting counseling from the start. Our church has been supportive, but only a very small handful of people at church even have a clue about what our life is like on a daily basis. Even those with disabled kids don’t get it, since their own kids’ needs are totally different than ours. But we don’t expect much from the Church. We go to worship and be a part of other Believers. We don’t expect the Church to meet our needs.
Christan: How do you keep from being resentful?
Matthew: Prayer. The truth is that we are resentful. We’re jealous of the life others have, the life we want. We’re not thrilled with our lot in life. We hate cerebral palsy, epilepsy, and intellectual disabilities, although we love our daughter.
Christan: What are your long-term goals for Claire?
Matthew: To be happy, healthy, and involved in rich relationships with people who love her. Same as most people.
Christan: What advice can you give on how to treat people who are disabled?
Matthew: Treat them as normally as you can. Don’t think of them too highly or too lowly. They don’t want pity. They don’t want to be trophies. They just want to be normal. Talk to them. Interact with them in any way that you can. Don’t assume that they are different. Assume that they are the same.
Christan: How has God redeemed some of the pain and heartache?
Matthew: Well, I see the role Claire is playing in others’ lives. She’s 12 and has changed more lives than I have in my 41 years. She has a special ministry to others. She meets others’ special needs by giving them her full attention, hugs, smiles, laughter, and all sort of nonverbal gifts. She makes people feel loved. She inspires people everyday. It’s beautiful. She can’t do much, but she can love. Hmmmmmm… I Corinthians 13.
In an effort to be polite, we look away from those in wheelchairs and tell our kids not to stare. But maybe we can start affirming all are made in God’s image by making eye contact. And then smiling.
In his original dialogue with us, Matthew concludes with a reminder of what’s truly important — loving others. It sounds like such a simple command — Love God. Love others.
However, our abilities, our awareness of the culture around us, and our desire to preserve our self-worth cloud our purpose time and time again. But Claire, inhibited in a severely disabled body, becomes our tutor to love others without boundaries.
Let’s love her back.
Join me again on Wednesday as Matthew gives an update on their family. We’ll hear how his situation has changed in the past four years. We’ll hear how he has changed, too. Matthew will bravely reveal what he’s still wrestling with and what redemption has risen out of his suffering.
See you tomorrow.