English
Korean
Spanish
My husband Jonathan and I came to First Baptist Church in Mansfield in 2018. We both grew up in Fort Worth and had lived in Houston for a time while he finished law school. I worked full time for Child Protective Services for almost nine years, and to me, that was a ministry working with an underserved people group that needs love. It was very important to me.
We started our family, moving back to Dallas-Fort Worth after law school, and our first daughter, Emilia, was 2 when we joined First Mansfield. I was pregnant with our second daughter, Julianna, when COVID hit. She was born right in the middle of the lockdown, so we attended church from home for a long time just because she was so little.
Julianna is now 4. She has a genetic disorder called Rett Syndrome. It’s a mutation on the X chromosome and it affects the development of a specific protein in her brain. That protein works with retention of developmental skills. Rett Syndrome is very rare. It’s found in 1 in 15,000 female births. For girls, they have a second X chromosome that allows it to counteract the mutation. When you have a child with Rett, they appear to be developing normally. The syndrome has four stages. Stage one is normal development. Stage two can arise anywhere between 12 months old and 3 years old and is the regression stage. Julianna had words, she could say, “mom,” “dad,” “bunny,” “book.” And then over time she just stopped talking. She was able to use a straw and pick up food with her fingers, the fine motor skills, and then she just didn’t. She was very slow to walk.
You dream of your children going to college and getting married and having children, and that child disappeared. I’m in a better place now because I know it’s not the plan I had for her, but there’s a plan God has for her and it’s going to be beautiful. But I just had to have that moment of the grief of losing the child I thought I would have. And then it affects the future of my older daughter, Emilia. At some point in her life, she will be a caregiver for Julianna. I’m so thankful for Emilia’s tender heart and love for people. That’s really helped me feel comfortable and confident in both of their futures. Emilia already talks now, at 8, of how she’s going to take care of Julianna when we’re not here anymore. And it touches my heart. I tell her that’s a long way away.
When we started going back in person to First Baptist, we were in the middle of trying to figure out what her delays were. And that’s hard when thinking about telling a nursery volunteer, “Oh, she’s 20 months, but she doesn’t talk.” It was something we didn’t want to have to explain to a different person every time we went on Sundays when we didn’t really have answers. We needed to find a new life group since our former one was gone. We visited all the ones that catered to our stage of life. By that time, we had found out about Julianna’s diagnosis, and we hadn’t really mentioned it to anyone except our pastor, Pastor Spencer [Plumlee], and the preschool minister. In the life group we chose, there were three other families—two that have children with Downs and one that has a different genetic disorder that affects her mobility and bone growth.
I see now that God laid it on our hearts that that’s where we need to be. These are our people. And that was even before First Baptist had a special needs ministry. God was already doing things.
Jonathan and I now lead our life group that has some of those same families in it. A couple of Sundays ago, we were sharing our prayer requests and one of the moms was like, “I just now realized how many of our children have neurological issues.” We are able to support one another because it is such a journey with highs and lows, trying to figure out what’s best for our children when they can’t tell us. So being in the same circumstances with other families provides a camaraderie I guess, being in the same boat as each other and being able to support one another.
Jimmie Gillum is our second special needs minister and she’s done an amazing job growing the ministry. I think she’s brought something special to it, being the parent of an adult special needs child. That’s really going to help grow the ministry at our church even more, instead of just focusing on the young kids.
We also have the parents’ night out respite nights. I volunteer with them, but I don’t take Julianna since I have extended family who would come watch Julianna any day of the week. I do volunteer because they’re so important. Jimmie’s done some family get-togethers, different events and activities so we can spend time with other special needs families outside of church time, and spending time with volunteers who are giving their time on Sundays during the life group hour and the service hour.
For Julianna, she has a buddy and there’s several, but two or three specific people will go with her. She’s 4, so she’s in the special needs classroom, but then she goes to the fours class and her buddy goes with her. She’s able to be around children her own age and then go back to the special needs classroom if she’s not feeling it. If she is, she stays the whole time and then comes back and we pick her up from there.
My favorite verse is Lamentations 3:22-23: “Your mercies are new every morning.” Every day that I wake up and I see Julianna learning new things or developing new skills, it’s just a reminder that God’s not done, and she cannot be limited by a diagnosis. I’m thankful I have that outlook. Psalm 146:6 talks about God creating the heavens. Julianna doesn’t calm down like a normal child, and cuddling or holding doesn’t work either. Right after she’d been diagnosed, we had a screensaver on our TV that was constellations and galaxies, and I could put those pictures on and she would stop crying. We now have a starlight that shines up on her ceiling and it just brings her such peace. I was very thankful that Scripture can remind us that God is in control of all things. All of His creations are beautiful and special.
Want to share a story of what God is doing in your life or your church?
