Series on Suffering: Parenting A Disabled Child (Update)

 

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Welcome to Day 2 of *Matthew’s story. Yesterday you met him, the dad who bravely exposed his heart by giving us a glimpse into family life with a severely disabled child. His daughter can’t walk or talk, yet her personality is one who that would dance and converse all day long if she could. Throughout this Series on Suffering, our guests will not only be giving updates four years after their original interview, but they’ll be getting real about some specific aspects:

  • How has your situation changed in the past four years?
  • How have YOU changed in the past four years?
  • What are you still wrestling with?
  • How have you seen redemption come from your suffering?

May we be people who live reflectively. May we always acknowledge how we’ve changed at the core by interacting with our world and the people in it. May we recognize the light of redemption instead of being swallowed up by the shadow.

*All names have been changed.


How has your situation changed in the past four years, Matthew?

In the last four years, we have not had a major life change of any sort. However, there are definitely some significant shifts. First, our daughter has grown physically. She now weighs over 100 pounds and is over 5 feet tall, so it is no longer easy to move her, even with two people. It takes more time, equipment, skill, and people to do the basic tasks, such as getting dressed, bathed, positioned, toileted, and active. And the danger is greater for her or her caretakers to be injured in the process, especially if she is not cooperating. It can be a wrestling match at times, and it can be upsetting to everyone involved. And that leads to the second shift.

Second, Claire is far more emotional now that she is in the midst of puberty. Her emotions swing wildly, quickly. Much of this is related to her high need for a social life. She is a true extrovert who loves people, and she can’t get enough of people, which is a tall order to fill daily.

Another shift is that we can’t travel with Claire any more. It is just too difficult for everybody, and the upsides are so small and so few. So we take very short trips without Claire, and we do some “staycationing. ” Travel is something we look forward to doing someday in the distant future. Claire loves routine. She wishes every day could be a school day with all the people and the routine and the safety and the fun. So, we do the best we can to create an action-packed daily routine, anticipating problems to solve before they happen.

Our life with our son has changed a lot in the last four years. Jonathan is now 17 and very independent. We have had to let go of controlling so much, and we have to dance around his emotions, his needs, and his opinions. In just 18 months, he will be off at college somewhere. That’s a huge change coming soon that we are not looking forward to, but we trust that it will be fine when the time comes. We are starting to think about life without him in the house. It’s a sad reality of a future of caring long term for one disabled adult, rather than two teens.

I think things will feel different if Claire’s mood swings settle down, around the time Jonathan goes to college. We hope that things get better as she matures into adulthood, but our experience so far is that things don’t get easier. Normal just shifts.

Another thing we think about more often now is Claire’s adult life. We don’t have a clue how long she will live, and I’m not sure which is more overwhelming: losing Claire or living with her for the rest of our lives. We try to trust God for that, but it’s a new challenge.

How have YOU changed in the past four years?

I think we are tougher. We can handle some really big problems with relative ease. Sometimes we listen to our peers talk about their troubles with their kids or spouse or mother-in-law, and we can’t relate. Their troubles seem so petty, so easy to deal with. It’s hard to empathize, and we can get resentful or just disengage from them. We’ve lost quite a few friends over the years due to the vast differences in our problems.

Kelly and I have to be allies. Our marriage must have unity and love. We must care for each other. It’s a do or die situation. In reality, our marriage has gotten stronger in the last four years. We have learned that our spouse is not the enemy. We go after problems, instead of each other. It’s not that we don’t argue, but those arguments usually end in unity, as we face our problems side by side.

Another change is that my wife and I have had our fair share of medical problems in the last four years. Our health is essential to the family, so we are getting the medical care and taking care of ourselves better. It’s all related to sustained stress and exhaustion. Again, it’s a do or die situation. Neither one of us can afford to be sick or diseased or die. It’s a team issue.

What are you still wrestling with?

Our condition is chronic. We are still dealing with the relentlessness of caring for someone with so many needs. Maintaining life requires both of us working hard and being super responsible. We don’t get much free time. We don’t have much of a social life, not many friends who we do fun things with. We sometimes feel like we are not individuals with hobbies, dreams, choices, etc.

My wife is running two small businesses: The larger one is the busyness of caring for Claire’s physical, intellectual, and emotional needs. It’s a full-time job. In addition, she runs a part-time business (15 hours per week) tutoring kids, who also have special needs academically.

In addition to the daily hard work of meeting our daughter’s needs (as well as the rest of the family’s needs), there is always the weight of responsibility for Claire. Her physical survival, her emotional wellness, her intellectual stimulation, and her overall development are each heavy and relentless. So, even on our occasional weekend getaways, there is always a heavy sense of responsibility that never leaves. We know that someone must always be looking out for every need (seen and unseen) in Claire’s body, mind, and spirit. And each year that goes by, Claire is more and more aware of what she needs and how much she depends on others to help her. If she is not cared for well all the time, she can get very scared, very sad, very sick, or all of the above in a really short period of time. She is fragile in one way or another, especially now in the middle of puberty.

How have you seen redemption come from your suffering?

Claire touches people in deep ways everyday. She brings great joy to people each day, That alone is a whole lot of redemption.

In addition, Claire’s special needs have created a need for selflessness in our family. Any small amount of selfishness is glaring. That has caused trouble, but it has also created character. Our son is a kid who has grown up around people caring for another person. It’s the norm. He has seen dozens of PTs, OTs, PCAs, RNs, and babysitters who care selflessly for his sister. His parents require him to pitch in and help around the house because it’s what we all must do. He has been raised in a house where prayer is essential to get through the normal days, as well as the really rough times during surgery recovery and other times of sickness. He has character beyond his years because of it all.

All these young women who come to help Claire are learning about family life. So many of them — young women in their 20’s who are often engaged to be married — get to witness up close what a strong marriage and family looks like. They see the reality, and they see that we all love each other and work together most of the time and pray and somehow make it work. Many of them tell us how valuable that is because they come from broken homes and have never seen a family eat meals together, cook and clean together, play games together, and tease each other and still like each other. Kelly mentors them in an informal but powerful way.

We know that God provides in times of great need. We know that things always get better because God redeems the hard times. So when Claire had a full spinal fusion surgery two and a half years ago, we knew that God would sustain us in the difficult recovery that was so difficult for so long. It got better. Good things happened both physically and relationally because of the tough times.

We believe that Claire’s life, no matter how long it lasts, is bringing love to many people and building the character of many. All of that honors God.


My goodness. I’m reading Matthew’s update, and I have a range of emotions. Do you, too? How does his story challenge you? What steps does it motivate you to take? How are you challenged to love others, pursue community, and sacrifice more? We have a lot to process already, and our series has just begun.

Join me next Monday as we peek into another type of heartache… the all-too-quiet suffering of miscarriage. Do you know someone who has lost a baby before her child’s lifetime even started? Do you have a friend who tried to move on, but the grief won’t loosen its grip? Yeah, me too. Together we’ll come to listen. We’ll come to learn. 

Series on Suffering: Parenting A Disabled Child

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.

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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.