A Conversation About Raising Children With Disabilities

My sister Jenny is a gifted lady. She has memorized nearly every birthday for every person in her church and faithfully sends a card to each one. If quizzed, she can quickly recall the phone numbers of family friends from our childhood. She often recounts the exact wording of conversations that took place three decades ago. (Watch out what you say around her. It will be remembered!) It truly is a joy to have Jenny as my friend.

Jenny also experiences challenges. Her hydrocephalus and the damage it caused to her brain at birth has made everyday life an uphill battle. My parents have faithfully helped Jenny through these challenges for the last thirty-seven years. Although I do not begin to understand all that goes into parenting a child with a disability, the topic has a special place in my heart.

The following will simply consist of a conversation with three families who are each raising a child with disabilities. The purpose of this conversation is two-fold:

1. To encourage those raising disabled children and remind them of God’s abundant grace.
2. To equip others who know families with disabled children so they can more effectively minister God’s abundant grace.

The Early Years—Brandon and Kaylee Unruh

Please introduce your family and tell us a little about Grayson. How has he blessed your family?

We are the Unruh family. We have two beautiful children named Grayson and Harper. Grayson will be turning 3 in March and Harper is 7 months old. Grayson was diagnosed with a rare genetic mutation called CDKL5 when he was 8 months old. He battles daily seizures, is non-verbal, and is confined to a wheelchair in addition to other difficulties.

Despite all his struggles, he is the sweetest boy in the world. His little babbles that he makes throughout the day bring us so much joy. When he makes eye contact with us, he lights up our world. We love him so much and we feel so fortunate to have him in our family.

What is one of the most powerful things God has taught you as you’ve parented Grayson?

For me (Kaylee), I’ve seen how God truly is my source of strength when I am weak. There are many days that are challenging, and often, I am tired (whether it be physically, emotionally, mentally, or spiritually). But it is in those moments when I pray and ask God to carry me through another day that I feel His loving arms wrap around me.

For me (Brandon), God has taught me of His sovereignty. I have learned (and continue to learn) that in all things God is in control. There is nothing in our life or anything that comes up in Grayson’s life that is outside of His perfect plan for our family. Because of this I have been challenged to relinquish hold of the control I wish to have and give it to God.

On those difficult days, where do you find your joy? Are there any Bible verses that have been especially encouraging?

Knowing that, one day, Grayson will no longer battle the physical difficulties that he has is a great encouragement. Revelation 21:4 says, “He will wipe away every tear from their eyes and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore. For the former things have passed away.” It stirs up lots of emotion, imagining our sweet Grayson one day being able to run and talk and endure no more pain.

How has raising Grayson grown your marriage? How do you find time alone?

Grayson has taught us many things about life and love. Life with Grayson can be stressful and very busy with his therapies and the time it takes to care for him daily. However, it brings a deeper understanding of unconditional love, that love you show to someone you know will never be able to repay, and you do it because of a genuine love for them.

For a while, it was hard to let go of control and allow family or friends to watch Grayson so we could have time alone, but we decided it was healthier to have that time together. We decided specifically at the start of this year to have a date night once or twice a month to reconnect with one another.

We also try to get the kids in bed at a reasonable time so we can have an hour or two just with each other before we head to bed and start the day all over again. It is refreshing to have just “us” time for a little bit.

What are some ways a church family can pray for a family raising a child with a disability?

If you know specific needs the family or child has, lift those needs up in prayer. Pray for strength and grace as some days may be harder than others.

The Active Years—Andrew and Janna Fry

Please introduce your family and tell us a little about Kyrielle.

Kyrielle is the oldest of our three children. She was born prematurely but developed normally for the first two-and-a-half years of her life. At that point, she had a rapid developmental regression, losing social and speech skills. After several months of a diagnosis journey, we learned she has a rare genetic deletion which results in many symptoms, most prominently autism.

Kyrielle Dawn is a true gift from God. Her name reminds us of the nature of our God. Kyrielle (short for Kyrie eleison) means “Lord, have mercy.” Dawn refers to the morning, the breaking of a new day. “The steadfast love of the Lord never ceases; his mercies never come to an end, they are new every morning; great is your faithfulness” (Lamentations 3:22–23).

What is one of the most powerful things God has taught you as you’ve parented Kyrielle?

The thing we come back to over and over for hope is the promise of restoration one day in heaven. Andrew Wilson writes in The Life We Never Expected (a book which encourages us a lot!), “Physical bodies become incorruptible, spiritual, glorious, powerful; no sickness or affliction will ever befall them again … . Every deaf ear is unblocked, every damaged limb is made whole, every blind eye sees. Autism and Down’s syndrome and schizophrenia and Alzheimer’s are swallowed up in victory. And ‘the last enemy to be destroyed is death’ (1 Cor. 15:26).”

The God who numbers the hairs of our heads also knows the number of our chromosomes. He counts the stars, declares that not one of them is missing (Isaiah 40:26), and in His omniscience knows the genes our sweet girl is missing. Before she was born, and long before we had an inkling that anything had gone wrong, she was not hidden from our God (Psalm 139:15-16). And one day in heaven, He will make her whole and complete in every way. On the days when I feel like I can’t do this anymore, I remember that one day, I won’t have to, and that gives me strength to carry on a little longer.

How has your church family helped you and your family since Kyrielle’s diagnosis?

Throughout our journey, so many people have shared Scripture through texts and cards and Facebook messages and emails. No verse was irrelevant, and they always came at just the right time. If you don’t know what to say to someone who has experienced this kind of loss, don’t hesitate to send a verse and a promise to pray. It was truly always an encouragement to us.

Meals and childcare were a very practical way to help when our schedule was spinning with appointments and the physical demands of daily care. Those “random” gifts are a breath of fresh air and a tangible reminder that we and our children are loved by many people.

One of the biggest helps has been that a fellow church member lines up a one-to-one aide for Kyrielle for every church service. With regularly scheduled aides, we can give our full attention to the music and preaching of a church service, and Kyrielle can participate in the class best suited to her ability level.¹

How do you seek to disciple Kyrielle? How does it look different from your other children?

Because Kyrielle doesn’t understand abstract concepts in the same way our other children do, most of our discipleship is a continuation of the activities we began when she was a toddler—reading picture Bibles, singing Sunday School songs, and leading her in very simple prayers.

Our goal with discipling every child is to reach the heart. We had to recognize, however, that most of Kyrielle’s negative behavior is impulse-driven or childish behavior rather than rebellion. This calls for a lot more patience and repetition of instruction—again, similar to parenting a toddler.

Are there any routines that help to guide your parenting of Kyrielle?

Most of our family routines are strongly influenced by two factors: Kyrielle does not sleep well, and, when she is awake, she requires intensely close supervision for safety reasons.

We are frequently up in the middle of the night and feeling jet-lagged the next day. Our motto on those days is “double the coffee and half the expectations” (kinda joking, kinda not). In other words, our routines ebb and flow with our energy level because that’s the only way we’ve found to make things work.

Because elopement is a major risk for Kyrielle, we’ve established a “Tag, you’re it,” system. Essentially, every time supervision is passed from one person to the next, we make sure there is eye contact and full verbal acknowledgement of who is responsible to keep her in sight. We use this all the time, but it is especially helpful in large-group situations such as family gatherings or church activities.

The Transition Years—Ron and Vicky Broadfield

Please introduce your family and tell us a little about Joy. How has she blessed your family?

We’re Ron and Vicky, and God has blessed us with two lovely daughters. We adopted our youngest, Joy, as an infant twenty-six years ago. She captured our hearts from the start and changed our lives forever. Over the next few years God revealed step by step to us the uniqueness of Joy and the struggles she (and we) would face. In addition to being born with a cleft lip and palate, she has been diagnosed with autism, neurofibromatosis, severe learning disabilities, sensory processing disorder, stress-induced seizures, ADHD, and the possibility of obsessive-compulsive disorder.

Each of these disabilities causes a number of daily challenges. With each new challenge the Lord provides strength, direction, and the answers we need. In spite of her disabilities, Joy is funny, helpful, compassionate, and wants to please the Lord.

What is one of the most powerful things God has taught you as you’ve raised Joy?

God has used Joy to teach us so many things. He has especially increased our compassion for others and our understanding of individuals with disabilities. God has also taught us to love unconditionally, be flexible, have more patience, and to trust in Him with all our hearts and lean not on our own understanding. But the most important lesson we have learned during this time is that God is always good, even through the difficult times. He is always with us. He knows who we are, what we are going through and He cares about us.

Where have you found support as you’ve raised Joy?

The world of disabilities is so different now than it was nearly 20 years ago when we first received the autism diagnosis. Back then, people had misconceptions and a lack of understanding about autism. Our circle of support was small. In recent years as the level of awareness about disabilities has increased in our society, there have been many good changes! Our circle of support (and Joy’s) has increased, and it has been exciting to see how our church family has rallied around young families with children with special needs or serious medical conditions.

As Joy transitions to adulthood, how has your discipleship changed?

Each phase of Joy’s life has brought new blessings and different challenges. We are thankful that Joy has shown maturity in different areas of her life as she has gotten older. As a young adult, she desires to be as independent and responsible as possible. To help her with this transition, we regularly help her evaluate the different areas of her life and pray for wisdom in determining what level and type of support she needs.

Below are a few examples of our discipleship goals:

• Spiritual—We want Joy to have a supportive church family, an accountability/prayer partner, and a Bible she can easily read and understand.
• Daily living—We want Joy to have a support team that can help her use checklists and alarm reminders to stay on track.
• Physical—We want Joy to have doctors and therapists who are supportive and respectful of our family’s desires.
• Emotional/Mental—We want Joy to have counseling professionals that respect our Biblical beliefs.

Joy is a tremendous blessing to us. Our desire is to help her become the woman that God designed her to be. We would not change her or our journey with special needs for anything in the world!