Random Seanies from the Week

Just some bits and pieces about Sean from the past week. Never enough to write a lengthy blog, but fun to remember anyway.

~One of Sean's ears was draining pretty bad last weekend, so we started the week off with a trip to his pediatrician and meds for an infection. (He has tubes, got them last year, they are still in place, this is the 3rd infection he's had with them.) Sean is really good about taking antibiotics, but is not a fan of the ear drops. I'm wondering if it's time to see the ENT again. Sean's usually such a good patient (with the exception of anything that requires sticking tape-like things on him.) He even used to be really good about giving blood, up until the last draw he had this summer. Even as a newborn, he would make a little cry when they first pricked his skin, then he'd just calmly sit through the rest. I remember it being very unnerving to a tech once! Some kids that have to see a doctor so much more frequently have a strong fear of them, Sean's the opposite, he's the pro that knows the routine!

~We showed up for school one morning last week at the same time as a girl that looked like she might be in kindergarten. I asked Sean if he wanted to say hi to her and he did. I asked her if she was in the same class as Sean and she said yes. Once inside, she asked me if she could walk Sean to class. I asked him if he wanted to and he said yes, so they held hands and headed down the hall together. He glanced back over his shoulder with a wave and big smile, "Bye, Mom! Bye, Aidan! See you later!"

~Friday night, Doug and I had a bottle of wine with dinner. Sean peered at Doug's glass of wine and Doug offered to let him smell it. Sean took a sniff and a little light bulb went off in his head. He pinched his thumb and index finger together, then lowered his hand into the glass of Merlot, dipping his fingers in the wine. He pulled them out and licked his fingers, saying "Amen."

~Saturday, after we picked up Grandma from the airport, we all went out to lunch together at an upscale burger/steak place. Sean's favorite thing to munch on at a restaurant is french fries, so we ordered a side of fries for him. They brought out a huge plateful of shoestring-style fries, which Sean loves. Given enough time, he'd eat the whole mound, but he eats very slowly, one fry at a time, dipping each bite in ketchup. Grandma snuck a fry off his plate and nearly lost her hand when he snapped, "No GamGaw! It's MINE! Sean fries!"

~Sunday afternoon, we came home from church and there was a message on the answering machine for Sean. It was one of his kindergarten classmate's moms. She said her son was asking her all day if he could call Sean and talk to him on the phone. She left her number, so Doug called her back and they gave the boys the phone to talk to each other. Mind you, Sean's phone conversations tend to be a mix of words, gestures and babbling, he often talks about what he's doing/playing with/looking at. I'm sure it was an interesting conversation! How funny! I don't even know which kid this is, I think I will have to have Sean's teacher point him out today at pick up time.

Easter Celebration

I know, I know, I'm falling behind again. We've have a week of gorgeous weather and just are having too much fun soaking up some sun! We had some good times celebrating Easter with the kiddos this year. All three enjoyed coloring eggs and hunting for goodies. Just gonna share some pics and get back to my sweaty dusty toddlers. :) Happy Spring, friends and family!

Photo and video editing at www.OneTrueMedia.com

A Lesson from St Nicholas and a Visit with Santa Claus

Last Sunday, our church had a special guest visitor for the sermon, St Nicholas! He spoke of his life and his purpose. The children of the parish sat in the front pews and helped by giving everyone St Nick pins to wear. Our pastor did a special blessing of the candy canes ceremony before communion and told of the history of the candy cane. All very interesting information for the children and adults! We tried to get photos of the children with St Nicholas after the service, but Ella was terrified and not at all interested in sitting on his lap. Granted, church is held right when she likes to take a nap, but she refuses to nap at church. Thus cranky, clingy, will not go to anyone baby.


Today we went to the Down Syndrome Society of Wichita's annual meeting and Christmas party. Sean was alllllllll about Santa and so excited to see him. He was really loving on him! Aidan thought it was cool to see Santa and loves the goodie bag of gifts they got. Ella, again, not so down with the man in the beard.


I'm sure next year will be a different story! So much for a Christmas card opportunity. We will just have to try to take some in front of our tree, I suppose!

Friday Thoughts From Family (Guest Blog Posts by Sean's Family)

“You will really enjoy Sean—Down syndrome children are so loving.”

Every time someone says that to me I grit my teeth. I feel as though I am supposed to react with something stupid like “I am so thankful that Sean has Down syndrome because now he is more loving.” No, I am mad that he has Down syndrome and would gladly accept his worst days, his extreme stubbornness and his flopping in exchange for him to have the life of a healthy child.

Is he more loving because of Down syndrome? I don’t know. He is a loving child who runs with his clumsy legs flying to throw himself around my legs when he sees me. He is a loving child who gave me the name of Grrrrrndpa! He is the loving child that shared with me one of the most moving moments of my spiritual growth.

Sean came to the altar with me one Sunday for Holy Eucharist. It was his habit to always go up front and Fr. Mike would give him a blessing. Over the course of time, Sean noticed that others were receiving a communion wafer and he was not. He began to complain. On the Sunday that he went up with me, he was standing beside me as I knelt to receive the bread and wine. I held out my cupped hands for the bread so Sean mimicked me and did the same. This Sunday the celebrant was Fr Larry, not Fr Mike. Fr. Larry did not know of Sean’s eating problems, for at that time Sean had never swallowed anything other than baby food. Fr. Larry placed the wafer in Sean’s hand, and before I could get it, Sean popped it in his mouth. I looked at Fr. Larry with the look of total terror—I knew from experience the Sean would spit it out—the bread that had been blessed, the Body of Christ. Fr. Larry saw my fright, and with wisdom beyond my imagination, he said simply, “It’s between Sean and Jesus.” Sean chewed on the wafer for awhile, pushed it around with his tongue and in a miracle that can only happen with God’s help—he swallowed the wafer, then turned and just beamed at me.

My sister and I used to ask my mother, “Which one of us do you like better?” And my Mom would always answer the same, “I love you both in different ways.”

Because Sean is a special needs person, it is hard to not feel something extra for him, to respond to those moments when he is total, pure love in motion. But I have 3 other grandchildren and I love them each in different ways. Sure I have been blessed by the way that Sean loves. I have also seen his other side. He’s a boy, he’s a 5 year old, he’s his Father’s son with a few of Doug’s less attractive characteristics, and I am thankful for every part of his personality because he is My GRRRRandson!!!

Written by Larry B. Minner, Sean's paternal grandfather

Christmas Photo Album

Not only did my mom drop the hint that I need to update, but even Doug asked why I haven't yet! Sorry! I feel like I am still in Christmas recovery mode. Rather than posting loads of details, I will post loads of pics. We had a fabulous time with both sides of our family. The kids were spoiled rotten as usual. Food was wonderful, company was fun. I even got to have a girls shopping day with my mom and sister, plus a movie date to see Marley & Me. (Miss Ella Roo came along, of course.)

Oh, and thanks to my blogging comments, I got a sewing machine for Christmas! Woo hoo! I am eager to start learning how to sew. Okay, on with the show.

All three kiddos just love their Santa gifts. Good job, old man!
Santa brought Ella a jumpy, exercising thing.


Santa left Sean a box full of wonderful Wiggles stuff: Captain Feathersword, a Wiggles V-Smile game and a Wiggles DVD.


Santa brought what Aidan asked for, a Playstation 2.


Ella gave her "Super" big brothers something special, custom capes.




Nana and Papa gave Sean a V-Smile Motion toy. He loves to try to play it, but doesn't quite have it figured out yet.


Ella needed some napping breaks.


Grandpa and Gramma decided to torture me encouraged Sean's musical passion with this keyboard/karaoke machine.


Doug's brother, Curt, gave Aidan his MOST.FAVORITE.GIFT. ever. Yes, we are bad parents, we let our 6 year old play a game for adults. I have no excuse for why we do.


Eleanor got her first doll, from Nana. Nana said she couldn't resist because it looks like E, with the blond hair and blue eyes. Nana also got her the pink Bumbo chair. Luckily, Ella's big thighs still squeeze in there.


Of course, they got more than this, but I don't want to bore everyone! Let's just say we are very blessed to have so many people that love us and love to see our family happy.

Oh, and one of the greatest gifts this holiday: Sean took communion at Christmas Eve service! He ate all of the wafer that was given to him and was so pleased with himself. He rubbed his tummy and said "Yum Yum Yum!" Spectacular! Then on Saturday he stole Aunt Tanya's chair from her at dinner and nibbled on the cheese on her cheeseburger, dipped fries in ketchup & sucked it off, and ate 3 grapes (chewed them even!) Amazing amazing amazing!

Sean the Episcopalian

Every Sunday that we can, we bravely take our trio of kids to church. Our church has a children's service that runs upstairs during the adult service, but Aidan and Sean are not willing to go up there without one of us. Sometimes Doug or I will take them upstairs while the other enjoys the service downstairs. Usually we just sit in a pew near the back and hope to keep them quiet enough to last through the service.

The boys have made a several adult friends at church, one in particular is a lovely woman in her late 60's/ early 70's named Jen. Jen always is eager to see the kids and chats to them. She makes sure Aidan gets his fill of brownies at coffee hour afterwards.

Today, Aidan asked to sit with Jen at church, armed with a coloring page and color pencils. She sits in the row right behind us, so it was no problem to keep an eye on him. Soon enough, Sean wanted to join them. She was so good with him, reading him stories, helping him color. He flirted with her and the ladies in the row behind her. When the priest came down the aisle to shake hands and say "peace be with you", Sean extended his hand like a gentleman. Eventually he wandered back up to me, passing another boy on the way. He reached over the pew and rubbed the little boy's head in a fond, puppy way.

When it was time to go up for communion, Sean led the way, smiling and saying hi to everyone. Since Sean doesn't eat table foods, we don't allow him to take communion for fear he'd throw it or do something inappropriate with it. Unfortunately, he is determined to try to get this little round item that everyone else it getting. He stands there, ever so patiently, with his hands cupped. I try showing him to hold his hands folded in prayer instead, but he insists on extending his hand to receive. Luckily our priest knows that Sean isn't ready to receive yet, so he just shakes Sean's hand then says a prayer while touching Sean's head. Sure enough, when Father M moves on, Sean states "Me? Me?" while still extending his hand. I say a quick prayer with him, then guide him back to our seats.

I wonder what to do, am I doing the right thing by not letting him try to take communion? It's possible that he might actually put it in his mouth, as he seems so eager to follow what he sees everyone else doing. He has been taking a few small bites of food at school (but won't for us) so he *might* swallow it. My fear is that once it's in his mouth he will realize he doesn't want it and spit it out in front of the whole congregation. It's not like I can get one to give to him in private to see how he'd react.

I feel so bad for him about his food issues. I can see that he wants to be a part of the social aspects of eating but is just afraid to try. He loves to follow along a buffet line. Today he waited in line at church (by himself, I was sitting with E and Doug was talking to someone) for a piece of cake. He got his plate with a big chunk of cake on it and gingerly walked to our table. Part of me watched him with pride, he was so careful and looked so grown up. The other part of me thought, "people are going to think we are being wasteful, they have seen that he never eats here." When he got to the table he gave the cake to Aidan, cutting off bites with a fork and trying to feed it to Aidan. He even offered a forkful to Ella. I pray every week that he will make this leap past his food issues and move forward.

Sean has made his own place in our little church community, just as Aidan has. It delights me to see them welcomed and wanted equally. I grew up with church as an important part of my life, as did Doug, and I can't help but think ahead of today about how the boys will grow in our church. Eventually, they will be able to settle down and pay attention to the service. Eventually, they will sing and pray along with us. Eventually, Sean will eat that piece of cake himself, just as he will receive communion. I have faith that God will help Sean reach these goals, just as He will help guide all of us.