Mikey’s Story

Mikey’s Story

Every Sunday morning at 9:15 am, Kari O’Reilly is getting her steps in between totZone and kidZone. Why? Because she is a GraceGEMs Coach! GEMs is our ministry that walks side-by-side with families of children and young adults who are diagnosed with special needs– God’s Exceptional Miracles.

When I had the privilege of shadowing Kari, I assumed she worked with children in this field or had some experience of the sort. She sure did, but rather as a mother. Kari and her husband, Mike, were blessed with Mikey and Katie as their two children, one just happens to be on the other side of Heaven with Jesus now. This is part of his story, and it continues on today.

Mikey was 24 years old on October 23, 2015 when he had his “Angel Day,” as the O’Reilly family calls it. From the day he was born to the day that he became whole in Heaven, Kari never left his side, even though the doctors had told her not to even take Mikey home from the hospital because, “He won’t make it through his first year.” 

With an Apgar score of 2 out of 10, Mikey started seizing right away, his right lung collapsed, and they had to intubate him immediately before rushing him to the closest children’s hospital. Doctors had told Kari’s parents they would be calling to let Kari and Mike know that night that their newborn had passed away. Before dawn, Kari had this odd feeling to call the nurses and check on him. Mikey’s nurse told her, “I don’t know how to explain this to you, but Mikey’s lung has just completely re-inflated. He’s breathing on his own.” Kari’s dad said, “I know how to explain it: Your grandma has been on the phone all night calling every Christian she knows across the nation to pray for him.”

Mikey defied all odds despite his dismal prognosis of cerebral palsy, microcephaly, spastic quadriplegia and mental retardation. As he grew older, complications increased and were added to by a number of medical diagnoses.  He faced numerous hospitalizations: spinal fusion, hip surgeries, feeding tube placement, lung lobectomy and a number of other health related concerns. Finally, it all became too much. Kari stated, “Even though he was only 24, Mikey was like an 85 year old man inside from everything he had to go through, yet never progressed above a 6 month old level.”

So, can the Holy Spirit work in children like Mikey? Absolutely.

“Mikey led me to my salvation,” Kari proclaimed. She grew up in a family that said as long as you just believe John 3:16 to be true, you’re good. It wasn’t until September 1999, living at a new duty station with her husband deployed to a war zone and two small children, when Kari knew she needed more. She threw herself down on her family room floor and cried out to God, “I can’t do this anymore!” Her heart heard a soft reply, “I know, but I can.”  God had used Mikey to call her to Himself.

Kari knows that Mikey, and kids with similar challenges, have the same capacity to reach people for Jesus as any of us do, if not more. Through tears, she concluded, “Mikey went through more than what 100 people should go through. There were times it was flat out horrible. Yet, he would still try to make you feel better if you were down. He taught me, and all who were blessed to know him, what godly love truly is.” 

Mikey’s story is just one. We know there are many more, and GraceGEMs is here for you—whether to serve with or be served by! And to parents like Mike and Kari, we would love to walk by your side and believe in your child just as Christ does.

Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him.’”

-John 9:3

Below are interview questions answered by Kari:

  1. What was it like going to church with a child who was diagnosed with special needs?

Being a military family, we’ve been all over– California, Hawaii, Texas, Virginia, Arizona, Georgia, and Maryland. Our best experience was when the kids and I went to a small church in Georgia of about 200 people. Mikey tended to vocalize at the quietest part of a sermon. Our pastor never let it faze him and would just say, “Mikey says AMEN,” and then the whole church would say “Amen!” They had a special friends program through AWANA as well. Yet, I taught Sunday school in an old building without an elevator, so Mike had to stay home with Mikey, at least when he was not deployed. Mike was gone 2.5 out of 5 years in Georgia, starting when the kids were 3 and 8.

Nancy and Barry Mauldin were side by side with me and became our surrogate family. They were there. The church was there. In 2002, Mikey was rushed to the children’s medical center due to a severe case of acute pancreatitis, which placed him in a medical coma. All I did was call Nancy and say I need help. Katie basically lived with them for the 28 days while Mikey was in the hospital, and they had 3 daughters of their own. Church families took turns bringing us dinner; elders were there for us too. Specifically, Bill Small was a continuous source of support for Mike and I. He later baptized both kids—that’s another story, and box of Kleenex!

  1. Why did you decide to become a GEMs coach? 

God had me learn a lot by taking care of Mikey, and even though my own mission work with him is done, the mission is still there. Taking what I have learned and being able to help other families is rewarding. It is giving reverence to what God had me learn, and it heals me by letting me keep Mikey in a sense. If you told me the day Mikey died that I would survive a month without him I would probably have given you “the look” –the heartache was just too immense.

Our Heavenly Father works all things to bring glory to Him. When Jill Maddox reached out saying she needed more volunteers with the GEMs ministry, I felt God was telling me this was a way I could honor my son’s memory, but more importantly, honor God. I’m not a teacher, doctor or therapist, but I understand what these families are going through because my family lived it. How could I not give back what God had given to me? 

  1. What would be your biggest advice to families who have children with special needs? 

Let people help you. God is going to put people in your life for a reason, and you don’t have to be a hero by always saying, “I can do it, I got this.” Let others be there for you. It is OK to take some time for yourself. I didn’t do that enough. Yet, my mantra with Mikey was that I never wanted to look back wishing I’d done more for him.  But the line between “doing more” and exhaustion usually isn’t recognized until it’s been crossed.

One thing that has always stuck with me is that God never makes a mistake. He could have chosen anyone throughout the history of the world to be Mikey’s mom, yet he chose me. That is very humbling. What on Earth could I have done to have God gift me with such a miracle? Nothing! God gives as only He knows how to do.  He knew Mikey needed me just as much as I needed Mikey. My husband would be the first to tell you that Mikey is his hero. It’s true. Mikey was truly a blessing and I learned more from him– even though he never could utter a single word.

I would tell new parents to trust in God. Jeremiah 29:11-13 says, “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.” This really was my cornerstone for all the years I was blessed to be Mikey’s mommy.  I pray other families understand that they were chosen by God to be this child’s parent! 

  1. And your biggest advice to Grace families in general?

For people walking side by side with GEMs, I would emphasize empathy.  There are so many ways to bless a family with special needs. As rewarding as it is to work with the kids each week, I recognize it is not everyone’s gift. How about sending a card, taking them a meal, calling them and letting them talk without judging or even saying a word? Maybe you can help with their other children.  Katie adored her older brother and misses him immensely, but [she] would tell you that the next hardest thing to being the parent of a child with special needs is to be the sibling. I know what it’s like to feel desolate and alone, and I don’t want anyone to experience that. We are all part of the body of Christ.  When we sit back and do nothing while one of our brothers or sisters is in need we go directly against what God has commanded us to do. I’m reminded of what the Bible says in Matthew 25:40, “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’”  How awesome to be able to help these exceptional children and their families knowing it is bringing all glory to Our Father in Heaven!

–Laura Douglass, GraceStudents Intern

Inspired by Mikey & Kari’s story and interested in serving with GraceGEMs? Try it out at our GraceGEMs Summer Respite Night.

Parents of children with special needs, we’d love to connect with you. Contact gracegems@gcconline.org for more information about the ministry and help us learn how we can come side by side with you.