How I’m Raising Special-Needs Kids in the Midst of COVID-19

Baby Madison in mask

The Atonement has become the center of our lives in so many ways.

Christ knows us individually and intimately. He knows our pains, our feelings, our heartaches, and our sicknesses among so many other things. He knows us so that He, as the Good Shepherd, knows how to call us back to Him.

These verses in Doctrine and Covenants 50 have brought me comfort during minor heartache and even through paralyzing fear:

Ye are little children and cannot bear all things now; ye must grow in grace and in the knowledge of the truth. Fear not, little children, for you are mine, and I have overcome the world, and you are of them that my Father hath given me; and none that my Father hath given me shall be lost….wherefore I am in your midst, and I am the good shepherd, and the stone of Israel. He that buildeth upon this rock shall never fall.

I first read these words as a missionary more than a decade ago and never knew how important those words would be as a young father of kids with complex health issues.

“Bishop, if you see my family get up and leave during sacrament please don’t read into it…we likely just got anxious over any coughing or sneezing we just heard in the congregation.” This is one of the first things I told our bishop when we moved into the ward. We have three children with health issues that range from mild to complex, and a cough or a sneeze is also followed by the sacrament trays being passed around, which can have devastating consequences for our family.

Related: How to Dispel Fear

Our oldest experiences mild asthma that ACTIVATES when sick or in response to allergens, or inversions. Our middle child suffers from Very Early Onset (VEO) Crohn’s Disease and his treatments require daily medications and an infusion every eight weeks which suppresses his immune system. Our youngest at two years old has had eight surgeries. Her medical complexities stem from having Trisomy 21, more commonly known as Down Syndrome, and includes complex congenital heart defects and anorectal malformations. Her immune system is compromised due to being born premature and her many health issues associated with Down Syndrome.

Surviving COVID 19 Physically

Baby Madison in hospitalThrow in a world-wide pandemic and, well, nothing really changed for us. We started seeing cleaning and sanitizing products fly off the shelf, people wearing masks and gloves, and hearing new phrases, like “social distancing.” While the world is adjusting to these important practices, it is something that we, and many other parents, have been doing since the birth or the diagnosis of our medically at-risk children. When people would stop by unexpectedly, or approach our baby with a well-intended tickle, or when we would get invited to get-togethers with our friends and we had to ask them if they were symptomatic of any illness, this was us practicing social distancing.

For me, it has been fascinating to see the level of concern that people are now taking when it is their own health or the health of their family that is at risk. COVID-19 is a mysterious illness in a time of immediate information (often misinformation), contradictory public and professional opinions, and a response from our Church which was both deliberate and inspiring.

COVID-19 has been a source of fear and concern for people throughout the world and my greatest hope is that has created a sense of empathy for those who are medically at-risk that extends well beyond 2020. This is the same fear and concern that we feel with the flu, the common cold, RSV, and even allergies.

When things get “back to normal” for everyone else, things will continue to be business of usual for us and many others. I hope people will continue to understand that hygiene is essential and that physical boundaries are important especially around the young, the old, and the medically compromised. I also hope that people know that it’s okay to call in sick from work or to keep their kids home from school if they have symptoms.

Surviving COVID 19 Spiritually

When my first-born was a toddler, several years ago, I was speaking with a friend after Sunday school while our kids played together. After a lengthy discussion, he looked at our kids and sighed. He said, “He’s got the flu right now, but I couldn’t stand to see him miss the primary program…he worked really hard.”

I abruptly ended the conversation and we went home. We were nervous, cautious young parents with our oldest daughter, and events like this only compounded our feelings. Members of the Church, including leaders, need to know that it is okay to stay home if they are sick. It’s okay to not shake hands. It is okay to have boundaries and respect others’ boundaries. In fact, when we take the precautions listed above, we are keeping our covenants in a very real way.

Our baptismal covenant is expressed in Mosiah 18 when Alma is inviting his people, if they are desirous to be called the people of God, “to bear one another’s burdens that they may be light…to mourn with those that mourn…and to comfort those that stand in need of comfort and to stand as a witness of God.”

We risk violating that covenant if we are the source of causing burdens and discomfort to others by attending church services while symptomatic. We may also be the unintentional cause of mourning if our attendance, while knowingly symptomatic, spreads a seemingly common virus to someone who is medically at-risk due to age or pre-existing conditions and that virus, that could have stayed at home, becomes the cause of a medical emergency or even death.

If there is anything that this pandemic has taught me is that the Lord speaks to his people in very real and inspired ways and timing. Not even a year and a half before the pandemic hit and church services were temporally canceled worldwide, President Nelson taught, “As Latter-day Saints, we have become accustomed to thinking of “church” as something that happens in our meetinghouses, supported by what happens at home. We need an adjustment to this pattern. It is time for a home-centered Church, supported by what takes place inside our branch, ward, and stake buildings.”

Related: Moving Religious Learning into the Home

This is the perfect time to adjust our thinking, shed any unnecessary guilt about missing church for illness and recognize that our discipleship isn’t measured by the number of Sundays we made it to the meetinghouse for “church,” but by how we respond to those who are hungry, those who are thirsty, those who are strangers in need. It will be measured by those we clothe who have need, those who are sick in need of care and support, and those in prison who need empathy, for the King will answer us by saying, “Inasmuch as ye have done it unto the least of these…ye have done it unto me.”

Our discipleship will be measured by how we minister to others in their time of need and measured by how we allow others to minister in ours. If you find yourself ill and unable to attend Sunday services, let others into your life. Allow others to bless you. Allow others to feed you. Allow others to keep their covenants in comforting you by sharing with you what was shared during the services you missed. We walk the gospel path together or not at all.

This taught me a valuable lesson in being ready to take care of my family’s spiritual needs. Due to having my membership withdrawn three years ago, I have not yet received the restoration of all my blessings including the priesthood. Entering the covenant path by baptism for the second time in my life has afforded me and my family many comforts of the gospel, but not all. It has been especially difficult not to be able to provide my family with the frequent blessings they have needed through our constant medical needs and I’m not able to administer the sacrament in my own home during this unique time.

Not long ago, a friend had alerted me to something I had written, and later published, in a letter to my brother about the priesthood. I wrote, “the question we ultimately have to ask ourselves is ‘if the gospel was taught and ordinances administered  exclusively in the home, would I be prepared to take on that responsibility for the benefit of my family and for those I minister to?’”

What an incredible lesson I received concerning how my actions affect me, not just as an individual and my relationship with the Lord, but how they affect my wife, my kids, and many others. While I have been extremely grateful for the many sisters and brothers who have ministered to us in our home, I look forward to that opportunity to minister and serve my own family and to serve others in return.

The temple is also an incredibly significant topic in our family, especially seeing them close temporarily.  Our youngest, with all of her medical complexities, was born while my membership was withdrawn from the Church, during a time I like to call “the wilderness of mine afflictions.” She was born out of the covenant and therefore not sealed to us.

With eight surgeries, and more to follow, the thought of not being sealed to her troubles our hearts. As the time draws closer to possibly receiving the Restoration of Blessing ordinance, I wonder how long the temples will be closed due to COVID-19 and how much longer our sealing will be delayed. While the gospel allows for us to be sealed, even if she passed, it would be a sweet and tender mercy to experience the temple with her in our arms.

Leaning on Christ

In the last three years, we have faced the adversary and adversity in ways that we could never have comprehended. But because we have seen Christ’s engagement in our lives, we have been able to find joy in it all, even during this very real crisis.

I firmly believe that if I had not felt God calling me back to my faith in Christ and had I not accepted the many invitations I had received from church leaders, my family, and the Spirit to return to the faith, I would not have spiritually and emotionally survived these adversities. My family would not have survived these adversities. There would have been no leaning on Christ because I did not know Him then, as I do now. And because I know Him better than I have before, we are not only surviving but finding joy in Christ and His gospel.

When our already seemingly complex personal and family lives become further affected by external factors such as pandemics, earthquakes, governments, and the wicked intentions of others, we are assured that “his arms are stretched out still,” and that “in the world, [we] shall have tribulation: but be of good cheer; [He] has overcome the world.” The plan isn’t to outsmart the world, and get out of it unscathed, though that would seem ideal. Life is to be experienced and the plan is to accept Christ in all that we are called to endure, whether chronic illness, or plagues, or attacks from the adversary.

Related: Facing Adversity

Rory is a recently Returned Member of The Restored Church after years of semi-activity and excommunication. He is a husband and father to three and an advocate for an infant daughter with down syndrome, Congenital Heart Defects, and other disabilities. He gained a love of writing as a trained Public Affairs Officer for the U.S. Army, and a love for the plain and simple doctrines of the Church through enduring hard things.