Last week, I read two very sweet and uplifting Key Ministry blog
entries written by mothers of children with Down Syndrome. While both essays
express concerns for their children’s future, they also acknowledge the hope we
have, knowing that God will provide for our needs. In “Worried About Your
Child’s Future? Pray for Daily Bread,” Gillian Marchenko explains that people
ask her if her special needs children will ever live on their own or if they
will always live at home with her. [To read this essay, please click here.] She
herself asks the question, “What will it be like to care for adults with
disabilities as opposed to young children?”
As she considers this uncertainty about the future, she remembers the line from The Lord’s Prayer that her family recites daily: “Give us this day our daily bread.” She notes, “There is no way I can parent today without the daily strength God graciously gives…The only way to parent is day by day.” She concludes her essay, stating, “That’s how the future questions will resolve.”
Similarly, Ellen Stumbo addresses a major question parents of special needs children ask in her essay, “Will Our Daughter with Down Syndrome Live with Us Forever?” [To read this essay, please click here.] As she notes, “…who thinks about their child moving out on the day they’re born?” However, with the realization that her child’s life will be different, she candidly admits, “I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job.” Over time, she realizes, “I really, really enjoy my daughter.” Describing the sweet moments she and her husband share with this precious daughter, she comes to the conclusion: “So what if she lives with us forever?”
As the mother of a young adult with autism, I, too, have dealt with the concerns of taking care of an adult with special needs and wondered if and when he will be able to live on his own someday. In a little over a month, he will turn twenty-five, and people who don’t know our situation will ask if he still lives at home with us or lives in a group home for disabled adults. Even people who do know our situation will ask if and when he will move to a group home. Because of changes in how state funding is allocated for people with disabilities, he won’t be moving out anytime soon. However, Ed and I are perfectly fine with that. To borrow a line from Ellen Stumbo, we really, really enjoy our son.
To be truthful, I sometimes wonder how age will affect my ability to take care of Alex, performing the grooming tasks he cannot perform for himself. As I sit on the floor to clip his toenails, I’m thankful that I’m still limber enough at my age to sit cross-legged on the bathroom floor and lift myself up to standing position when I’m done. When I twist and turn my hand and head daily to make sure I have carefully shaved Alex’s face without any nicks or whiskers left behind, I’m thankful my hands are still nimble. As I help him get dressed every day, lifting his shirt onto the top of his head that towers nine inches over the top of my own head, I’m thankful that somehow God has given me the strength and energy to take care of my six-foot tall son. On those days I worry about how much longer I’ll be able to do these tasks for Alex, I watch Ed, who is ten years older than I am, perform similar caregiver tasks, and know that I don’t have to think about those things for at least ten more years.
When I am tempted to be overwhelmed by all the things I need to do for Alex or to fret about what lies ahead in our future, I have to remember to take things one day at a time, or, as Gillian Marchenko describes, “to parent day by day.” To calm myself, I often repeat aloud the scripture Philippians 4:13, which is posted on my refrigerator as a reminder: “I can do all things through Christ who strengthens me.”
Moreover, I often think about the worries of the past and realize that either they never came to pass or they resolved themselves over time. For example, Alex has pectus excavatum, a condition in which his breastbone dips down on his chest. When he was little, his pediatrician scared the daylights out of me, telling us that if it became worse, he could face a grueling surgery to fix the breastbone so that it didn’t press on his heart and lungs. Thankfully, that never came to pass, and the dip has become less pronounced over time. Nonetheless, I spent countless and useless hours worrying about a surgery we would not have to face.
Other concerns have taken care of themselves in time. For a long time, we wondered if Alex would ever be able to sleep through the night, but eventually we all were able to enjoy peaceful, uninterrupted sleep. Often when I awaken at my usual time in the morning, I thank God that Alex slept through the night, remembering the many nights he awakened and needed us to settle him back to sleep. For many years, we questioned if he’d ever be toilet trained, and eventually, he learned to use the bathroom independently and consistently. In fact, his main bathroom concern currently is that we always have enough toilet paper, and he gives us daily reports on how low the roll is running.
Perhaps the main question I have asked throughout the years has been, “Will our lives ever be normal?” After dealing with Alex’s developmental delays and anxiety and unpredictable behavior, we thought that we might never enjoy the peace and calm of “normal” life. However, because he has made such good progress, we are able to enjoy a more “normal” life than we thought possible, going to restaurants, concerts, and sporting events as a family. Last week during our quarterly meeting with Alex’s support team, as we told about the various activities he enjoys, his case manager remarked that Alex has more fun than anyone she knows. She’s right, and since he’s having fun, so are we.
As I look forward to the future, I don’t have all the answers. I don’t know when Alex will be able to live independently or how long he will live at home with us. At this point, Ed and I are delighted to have him home with us, enjoying the fruits of our labors to make him into the pleasant young man he has become. Moreover, we know that God has plans for him and trust that He will guide us in making any future decisions. Perhaps the greatest guide for handling the uncertainties of the future has been watching Alex, who doesn’t fret too much about his future, other than wondering how he can manage to fit in his schedule all the things he wants to do. In many ways, Alex is like the lilies of the field that Jesus describes in Matthew 6:28: “Consider the lilies of the field, how they grow; they toil not, neither do they spin.” Alex trusts that God and Ed and I will always take care of him, so he need not worry about the future. If he can be that faithful, so can I. Besides, we’re having too much fun right now and don’t need worry to spoil any of that.
“And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.” Romans 8:28
As she considers this uncertainty about the future, she remembers the line from The Lord’s Prayer that her family recites daily: “Give us this day our daily bread.” She notes, “There is no way I can parent today without the daily strength God graciously gives…The only way to parent is day by day.” She concludes her essay, stating, “That’s how the future questions will resolve.”
Similarly, Ellen Stumbo addresses a major question parents of special needs children ask in her essay, “Will Our Daughter with Down Syndrome Live with Us Forever?” [To read this essay, please click here.] As she notes, “…who thinks about their child moving out on the day they’re born?” However, with the realization that her child’s life will be different, she candidly admits, “I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job.” Over time, she realizes, “I really, really enjoy my daughter.” Describing the sweet moments she and her husband share with this precious daughter, she comes to the conclusion: “So what if she lives with us forever?”
As the mother of a young adult with autism, I, too, have dealt with the concerns of taking care of an adult with special needs and wondered if and when he will be able to live on his own someday. In a little over a month, he will turn twenty-five, and people who don’t know our situation will ask if he still lives at home with us or lives in a group home for disabled adults. Even people who do know our situation will ask if and when he will move to a group home. Because of changes in how state funding is allocated for people with disabilities, he won’t be moving out anytime soon. However, Ed and I are perfectly fine with that. To borrow a line from Ellen Stumbo, we really, really enjoy our son.
To be truthful, I sometimes wonder how age will affect my ability to take care of Alex, performing the grooming tasks he cannot perform for himself. As I sit on the floor to clip his toenails, I’m thankful that I’m still limber enough at my age to sit cross-legged on the bathroom floor and lift myself up to standing position when I’m done. When I twist and turn my hand and head daily to make sure I have carefully shaved Alex’s face without any nicks or whiskers left behind, I’m thankful my hands are still nimble. As I help him get dressed every day, lifting his shirt onto the top of his head that towers nine inches over the top of my own head, I’m thankful that somehow God has given me the strength and energy to take care of my six-foot tall son. On those days I worry about how much longer I’ll be able to do these tasks for Alex, I watch Ed, who is ten years older than I am, perform similar caregiver tasks, and know that I don’t have to think about those things for at least ten more years.
When I am tempted to be overwhelmed by all the things I need to do for Alex or to fret about what lies ahead in our future, I have to remember to take things one day at a time, or, as Gillian Marchenko describes, “to parent day by day.” To calm myself, I often repeat aloud the scripture Philippians 4:13, which is posted on my refrigerator as a reminder: “I can do all things through Christ who strengthens me.”
Moreover, I often think about the worries of the past and realize that either they never came to pass or they resolved themselves over time. For example, Alex has pectus excavatum, a condition in which his breastbone dips down on his chest. When he was little, his pediatrician scared the daylights out of me, telling us that if it became worse, he could face a grueling surgery to fix the breastbone so that it didn’t press on his heart and lungs. Thankfully, that never came to pass, and the dip has become less pronounced over time. Nonetheless, I spent countless and useless hours worrying about a surgery we would not have to face.
Other concerns have taken care of themselves in time. For a long time, we wondered if Alex would ever be able to sleep through the night, but eventually we all were able to enjoy peaceful, uninterrupted sleep. Often when I awaken at my usual time in the morning, I thank God that Alex slept through the night, remembering the many nights he awakened and needed us to settle him back to sleep. For many years, we questioned if he’d ever be toilet trained, and eventually, he learned to use the bathroom independently and consistently. In fact, his main bathroom concern currently is that we always have enough toilet paper, and he gives us daily reports on how low the roll is running.
Perhaps the main question I have asked throughout the years has been, “Will our lives ever be normal?” After dealing with Alex’s developmental delays and anxiety and unpredictable behavior, we thought that we might never enjoy the peace and calm of “normal” life. However, because he has made such good progress, we are able to enjoy a more “normal” life than we thought possible, going to restaurants, concerts, and sporting events as a family. Last week during our quarterly meeting with Alex’s support team, as we told about the various activities he enjoys, his case manager remarked that Alex has more fun than anyone she knows. She’s right, and since he’s having fun, so are we.
As I look forward to the future, I don’t have all the answers. I don’t know when Alex will be able to live independently or how long he will live at home with us. At this point, Ed and I are delighted to have him home with us, enjoying the fruits of our labors to make him into the pleasant young man he has become. Moreover, we know that God has plans for him and trust that He will guide us in making any future decisions. Perhaps the greatest guide for handling the uncertainties of the future has been watching Alex, who doesn’t fret too much about his future, other than wondering how he can manage to fit in his schedule all the things he wants to do. In many ways, Alex is like the lilies of the field that Jesus describes in Matthew 6:28: “Consider the lilies of the field, how they grow; they toil not, neither do they spin.” Alex trusts that God and Ed and I will always take care of him, so he need not worry about the future. If he can be that faithful, so can I. Besides, we’re having too much fun right now and don’t need worry to spoil any of that.
“And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.” Romans 8:28
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