Ok, so I’m back. And, in case you are wondering, my cattle and sheep made it through the weekend and so did I. Whew! Seriously. Many things to blog about so here goes. If you make it all the way through, tell me in the comments and I’ll think about sending you a gold star.
Buckle your seat belts and keep your hands and arms inside the car at all times. This is quite a ride. Here we goooooo…..
Weekend recap –
The funeral was…a funeral. Lots of crying, but so good to be able to hear all the nice things said about my uncle (some I knew and some I didn’t – like he was deaf but took my cousin to foreign films, huh, pretty cool). And, it was GREAT to see family. I’ve been a bit cooped up lately trying to keep Ryan away from crowds and it feels so good to be around people again. Although the occasion was bittersweet, I didn’t want the day to end and see everyone I love go home.
I sang “It is Well with My Soul” while my brother accompanied me on the guitar and my dad interpreted (into American Sign Language). I was emotional warming up and decided there was no way I could look at my cousins and aunt while singing and did a great job until right before going into the fourth verse. Three verses down, one to go, scanning the crowd, there’s the balcony where I’d run around with my sisters when we were kids, scanning the crowd, nice pleasant smile, there’s my cousin Bonni…oh crap…there’s my cousin Bonni. And now I’m crying. And somehow I manage to look at Bonni again who by now is signing “I’m sorry” and trying to look down while I mouth “I’m sorry” and try to stop crying. Crap, crap, crap.
Ok, deep breath, look away, turn away, face the side of the auditorium (yes, people, I turned away from the crowd so my dang eyes wouldn’t veer over to my dear cousin again). Ah, composure, kindof, breathe through the last verse, which I sing shakily. Whew, all over. Escape to the back to give Ryan his meds. Nice.
Side note – it was incredibly weird to drive up to the church/school where I went from birth through fifth grade. So many memories. Like the house the Floges lived in when I was really small – like before kindergarten – where my parents would go to play cards and hang out and put us three girls down to bed (and then the party really began as my mom explains). They have three sons, my parents had three daughters at the time. Fun times.
And the long, long sidewalk that led to the parsonage that was the biggest house I had ever seen. And, a huge, huge church foyer (which btw, now seems simply adequate), And a sprawling school with an enormous gym. So big that when I played in the junior basketball league the baskets seemed as high as the clouds. We had refreshments in that same gym and you know, it’s pretty ordinary and sits way less people than I would’ve imagined.
Sunday – quiet day in the house keeping Ryan away from crowds and allowing Henry to continue to heal from his appendectomy. We ventured out in the afternoon to take the kids to see “Up“. Cute movie – adult story line, but the kids still enjoyed it.
Monday Ryan had his pre-op face time with the plastic surgeon who will implant skin spacers under Ryan’s chest skin next Weds. in preparation for the Glenn procedure in August. It’s not really for the Glenn, but really to accommodate for the ectopic cordis when they close Ryan’s chest after the Glenn. The idea on Weds. is to insert silicone bags under the skin and then inflate them little by little for the next eight weeks. This will stretch Ryan’s skin as if he were gaining weight. This extra skin will be pulled closed over Ryan’s heart and omphalocele in August. We are unsure what the membrane that is there now will do once it is cut through so this gives the surgeon extra skin to play with.
The risks are minimal – the same as putting any infant under anesthesia and introducing a foreign substance to the body, but it is not invasive nor does it tinker with any bodily system. We don’t expect any complications to arise, but are being cautious since Ryan is still pretty fragile.
Tuesday (today) the kids and I headed downtown to the Natural History Museum with some good friends to see the Butterfly Pavilion. It’s a little structure that serves as a living exhibit with 300 butterflies flying around. The girls (and boys) had such a good time looking at all the different kinds of butterflies and stood in awe as butterflies landed on several of us.
It was really cool to be able to see such fragile insects up close and actually watch them drink nectar from flowers. Did you know some butterflies have really long tongues? Who knew? Ryan did a great job being out and about. He’s such a good baby. Not much maintenance at all other than, you know, having a feeding tube, having to see one of his many doctors at least once a week, having major heart and structural defects…..but no maintenance at all. 🙂 No, in all seriousness, he is a good baby who just happens to have health issues.
Here are some pics from today:
Look at the pure joy on Natalie’s face.
The butterfly is technically on the stroller, but we considered it to have landed on Ryan. (look at that chin – Ryan’s not the butterfly’s)
See the butterfly in my hair?
Natalie looking at a butterfly on someone’s shirt.
A luna moth up close and personal.
Conor sharing his ice cream with Ainsley before lunch (yes, we let them have ice cream before lunch… really, you’re only a kid once)
Ainsley outside the museum. I told her to sit where I could get the butterfly (sign) in the picture and she said, “Is there a butterfly on me? Did you get a picture?” So cute.
The four amigos…Ainsley, Conor, Natalie and Kaden.
Ryan outside the museum.
(c) 2016 Leighann Marquiss
Comments (15)
Hi Leighann,
My name is Lori and I am friends with your sister, Johanna. I’ve been reading your blog ever since I recieved the prayer request for Ryan’s first surgery. I myself am going thru a tough time but nothing like you have been thru. Sometimes I find it hard to turn to the Lord but then everytime I read your blog, I see the faith that you have and how you trust in Him and I strive for that same faith. I do admire you and how strong that you are. You and your family are always in my prayers 🙂
Leighann,
Feels like ages since I last spoke to you! I was at the Natural History museum today with an exchange student from New Zealand – we were going to visit the butterflies but the line was too long. I am sorry that we didn’t bump into you and the kids!
Hope to see you soon. Stay strong – I think you’re doing an amazing job!
Love,
Sarah
I think you’re so amazing to take two young children and your precious baby boy on such a good outing. I love going to the Museum of Natural History! Anyway, I would be scared to do it with only two which is how many I have. 🙂
I am always praying for you and your family as you go through these uncharted waters. Pretty soon we look forward to hearing that Ryan is completely normal and healthy. God bless! 🙂
Glad to hear that your livestock (and you)are alive and well!! lol The butterfly thing sounds so neat…we have something like that at the Botanical Gardens near here but probably on a much smaller scale. Hope you have a wonderful rest of the week!
Tyra
p.s. I did make it through the entire post by the way. 🙂
made it through the whole post!! i’m going to have to check out the butterfly pavilion!!! looks so fun!!
I made it through!!!!!! But I always love making it through your posts :)I’m glad you had some time with family, even if the circumstances were sad.
Hope you are having some time with Amy!
Read the whole post and really enjoyed it! Loved the pictures of your children in the Butterfly area of the museum.
~Paula
friends with your sister Johanna at SBBC
Very cute pics of the kiddos. Looks like a fun day.
I was thinking the same thing on saturday. “Hmm…this place doesn’t look as big as it used to” But was good to see it again.
Just want everyone to know that YOU did great singing at uncle bill’s funeral. You have a great voice. So not only do you write a great blog which I get a gold star for reading, but you sing wonderfully.
PS. I want my gold star in sticker form please so I can wear it with my wal-mart sticker. Thanks!! Love ya.
It was a pleasure meeting you all today. While History is inspiring, govenment is not but you certainly are. Thanks for taking a moment to share your baby’s challenge with us, The Fratts
Hey, Leighann…I also made it through the blog! You seem in much better spirits, and I am glad. I was very sorry to hear about your Uncle Bill. He was the only uncle on your Dad’s side that I really kinda knew. Very nice man, too young to pass on. The butterfly attraction sounded so fun! The kids looked like they had a blast…I really loved the pic of Ainsly in front! What a smile! And Ryan’s chins are oh so cute! Natalie seemed very interested in all of them on herself and everyone else too! I’m glad you had such a good time! Keep up the good work and I will definately keep praying for you all!! Love ya…Richelle
oh my, Ryan’s chin is so kissable. Seriously…he looks great!!! You have great milk 🙂 (lol, thinking of your previous post 🙂
That butterfly pavilion looks amazing!
Such a great post…lots of great news – and I read it all the way to the end. All of the kids are looking great – Ryan is getting so big – and summer looks like a lot of fun around your house!
So wonderful you were able to sing at your uncle’s funeral – how special!
that’s alot to process in a week and it looks like you came through like a champ. nothing like a few beautiful butterflies to remind you of God’s creation, his goodness, and his sense of humor (i mean who would think up a retractible straw for a tongue??). looks like you had a blast at the museum and i can’t get over what a little chunk ryan is!! hope the surgery goes well!
So cute, I loved the pictures, we may have to take the kids to museum, because that is cool. I thought the same thing about up, the kids liked it except when the dogs where chasing them, but otherwise they really like it. Please post about the surgery.
i’m only going to comment on the butterfly house–you are so lucky you got in on a tuesday! we went back in the early spring and they had already given all of the tickets away for the day!