Ok, this one’s for Tullie. All for Tullie.
When I was pregnant with Tullie, we didn’t know the sex of the baby, (because we’re the weirdos who don’t find out the sex, because we think surprises are fun) and Mike said, “Hey, if it’s a girl, lets name her Tully.” I said, “Like the coffee???” He said, “Yeah, why not? No one else has. I think it’s cool.” (There’s a coffee chain here in Seattle called, Tully’s for those of you who don’t know.) So, I rolled the idea around in my head for about 30 seconds and said, “Yeah, I like that. Tullie. Tullie Rose. Oooooo! Pretty!” Seriously, that was the conversation. So, I had to find out what this name meant, where it was from etc. Tullie is Irish and it had a few weirdo dark meanings, but there was one that stuck out and it’s the one that I believe. Tullie means, “At peace with God.”
Our sweet girl was a 31 week preemie. Her gender was a surprise as well as her diagnosis. After Mike came back down from the NICU and told me that Tullie had Down Syndrome, the meaning of her name kept rolling around in my head. At peace with God. At peace with God. Wow. For some reason, the meaning of her name meant a lot more to me in those early moments then what I ever thought it would if we had had a typical child.
Tullie came home with us 6 weeks later on oxygen. We were back and forth from doctor’s appointments, therapy sessions, Children’s Hospital etc. for a LONG time. They say the first year is the hardest with a child with special needs and they were right! Tullie was on oxygen for 10 months 24/7. We dragged that stuff everywhere we went.
It was hard to say the least, and, quite frankly, there were times we were tired and done. Having a child with special needs was not something that we asked for. We had people tell us, “Oh, you are so lucky! I’ve always wanted a child with Down Syndrome!” I’d think, “Do you want her?” Not that I would give up my child, but there were times I was tired and I was done and my flesh was weak and my heart was hard. Those thoughts aren’t right, but they’re real.
We couldn’t take the kids to church with us through the fall and winter because of Tullie’s respitory issues her first year. If Josiah caught a cold in the nursery then brought it home, it could have been really bad for Tullie. So, Mike and I would take turns. I’d go in the morning, he’d go at night, or what have you. Until some wonderful friends offered to watch the kids for us then we’d go to church together, and they’d go to a later service, which was really simply amazing during that time. All that to say, that one morning, I was at church alone and I was tired. I saw a friend and I collapsed on her. She took me upstairs to a pastor’s office and through the whole service (services are long at our church) she listened to me cry and she was a wonderful encourager. During that conversation she said something that changed my way of thinking. She said, “Sometimes you gotta just say the stuff you’re thinking to Mike or me, even the really ugly stuff. Once you say it, you’ll feel bad, but it’s out there, and it’s said and you can move on.” I thought I had to keep all the stuff that I thought in my head, because it wasn’t “good” or positive about the situation. I can’t go flyin’ off the handle with everyone, mind you, but with Mike or a close friend, or with Jesus, I need to say what I’m thinking. Jesus taught me that through Tullie. I may not have been happy with her diagnosis, but I learned a valuable lesson during grief. Say it. Whatever or how horrible it may be. Say it. Jesus carries us through it and He’s gracious.
After Eli was born, Tullie was just starting to sit up. At 11 months. Took awhile. By the time I was pregnant with Ellison she was trying to crawl. She mastered crawling when Ellison was about 5 months old. Tullie and Ellison started walking together Ellison was 18 months and Tullie was three. Tullie does things at her own pace. No one can speed her up. She wants to run, she’ll run. When she’s ready to do it, she will.
After Tullie’s early intervention she began going to a public preschool called Ready Start with Josiah. Tullie started to get all of her therapy services through the public school. She wasn’t walking yet when she started school and she was the shortest kid in the class. That first year of preschool, I felt like we were stuck. In fact, I had felt like we were stuck for a few years. Progress was slow physically and in her speech. I was getting kinda bummed out. I knew all of the therapy was helpful, but she had plateaued in all of her therapy that things didn’t seem to be going anywhere. I thought many times that I was going to be carrying this kid till she was 16!
She started walking around Christmas 2008. Once she started walking she was doing it more and more and it was fun to see her run across the backyard this past summer. It wasn’t until the Fall when she was going on the bus for school this year that I saw it. I SAW it! I noticed the huge progress that she had been making. All these little things had been going on for months and I noticed them all in one moment. I thought, “WOW! She’s tall! She’s standing straight! She’s getting on the bus herself! She can DO this! She’s INDEPENDENT! WOW!” Since then, I’ve been shaking my head in amazement. She TALKING! She’s WALKING! She’s RUNNING! She’s trying to dress herself! She puts things away! She is becoming an independent little girl who knows how to do things and is learning life skills.
I was at her parent/teach conference the week before Thanksgiving and as we’re ending the conference they said, “She’s ready to be mainstreamed into Kindergarten. She’s doing amazing.” They said that they didn’t always mainstream kids with DS into Kindergarten, not because they want to segregate them, but they simply don’t have the life skills to do what they need to do. Tullie will need a lot of support, but she’s ready. She’s READY! I really can’t believe it. For so long, I thought we would never get “here.” Wherever “here” is, but we’re here. It’ll be hard work, but she can do it and I’m really excited about it.
There are days I still grieve her diagnosis. Mostly because I’m selfish and I want something easier. Jesus knew what He was doing when He gave us Tullie. Her sweet smile and shy shrugs when she gets a little embarrassed melt me. Watching her try something new with the determination that she has astounds me. She waves at everyone and will give a stranger a hug (which we need to watch out for). She’s the first one to help to empty out the dishwasher and she’s the first to dance when the music is on in the kitchen. She loves life. She has no fear and she’s not intimidated by anyone. She’s Tullie. Her heart is sweet and Jesus’ glory shines through her sweet grin.