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. 

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