Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Tuesday, December 22, 2009

The holidays...

The holidays... This time of year has come around quickly. I can't believe it's been a year since we were coming back to Oklahoma with our little Mav. It seems like yesterday when we were flying back home. We placed him on the bed in the PICU in Oklahoma and he popped his big blue eyes open and looked at everyone like, "Where in the world am I and who are you all?!" I'll never forget that look. Oh, what a difference a year can make. Instead of picking out new mobiles for him (like we did last year), I've been making a grave blanket. Last year I had never even heard of a grave blanket. We still haven't finalized the details for the headstone. It is just so permanent - not something we can just change at any time. Sigh... at least it's comforting to know he's happy and not in any pain. His fight is over and what a hard fight he waged. All is good for him from now on.

The brevity of life has been brought to light once again this year as we experienced the loss of Greg's Uncle Roy just a couple of weeks ago. I posted about him awhile back. He was diagnosed about 5 months ago with cancer. He was an important part of Greg's life growing up and he will be missed by many. I can't help but think about the pain his wife, Aunt Linda, is going through right now. Keep her and their children and grandchildren in your prayers this holiday season.

Our kids are doing great. We had pics of them taken a few weeks ago for Christmas cards, and I still haven't ordered any, yet. I've decided I'll not stress about it and we'll have New Year's cards - perhaps even Valentine's Cards instead... Okay, that may be pushing it. It's been difficult for me to decide how to even do the cards - I don't want to leave Mav out. I think these worries over doing things the "right" way - when there really is no "right" way - may be adding to my procrastination. When we were having the pics taken, I couldn't help but think about the sweet baby boy that was missing from the picture. I started to cry at one point during the photo shoot. Just a week or so earlier, my sweet friend Mary ( surprised us with a beautiful red airplane ornament. When we received the box in the mail, I didn't know what to expect. I opened it and saw that perfect, shiny, red airplane and started crying. I knew it would be the perfect remembrance in our pictures. My photographer friend, Dejah, didn't disappoint. She incorporated it perfectly. I'll share the pics this week. There is one of the airplane all by itself that I just love.

The kids are glad school is out and we're enjoying our time together. We've made Christmas cookies and put up lights. Maddie made banana bread tonight and we watched "Elf" - the kids love that movie. They're spending some time with their grandma and Aunt Jan tomorrow so we can get a few things finished up for Christmas. Tomorrow evening we'll be making some desserts for Christmas Eve. Greg's family is coming over then. We're staying home on Christmas Day and some of my family may stop by then. The holidays have been and will be sad at times, but I don't want the kids to miss out on the joy of this season because of our sadness. It's a balancing act.

I'm finished with school this semester. It went well and I enjoyed it, but I'm also enjoying this break. I'm feeling more comfortable with clinicals and kids' ears are getting much easier to decipher. Greg has been feeling a bit better and we're very thankful for that.

What else? We're working on something exciting for the end of February here in Shawnee - it has to do with raising awareness and support for congenital heart diseases. I'll have more details later. I'm excited about it. There are many new heart sites out trying to increase awareness as well. I'm going to try to get links added on here for all of them. I'm not the most computer savvy person, but I'm sure Maddie can help me!

I haven't posted many funny stories about the kids lately, so I thought I would close with one tonight. Chloe and I were driving to pick up Maddie from dance one evening. We passed a "smoke shop" and Chloe asked what all those people were doing there. I told her they were buying cigarettes. She said, "I'm not going to buy cigarettes, mom. I'm going to buy groceries," By this time we were at the corner and stopped at a stop sign. On one corner was a large - think charter sized - bus for sale. It's been there for awhile and the kids like to talk about it every time we pass it. So, with barely a second passed, Chloe finishes her sentence... "and that bus. And I'm going to paint it pink... For all my kids... Like the Duggars." For those of you who don't watch much tv, the Duggars have a reality show on TLC called "Eighteen Kids and Counting." They have nineteen kids now - all are their biological children. Yes, our Chloe want to have lots of kids like the Duggars. She wants to be a momma and "the docta that helps you push the babies out." She keeps us laughing.

Hope you all have a safe holiday and remember Jesus is the true reason for the season. Love you all, jc


Anonymous said...

Juli, after reading your post today I had to tell you about an absolutely beautiful Christmas card we got a couple of weeks ago. It was from my friend whose three-year-old daughter died of a very aggressive brain tumor while we were living in Shawnee. At the time Anna died, she was their only child, and it has taken all this time...5 years or so for them to get pregnant again. Anyway, their son is now just 1, and her Christmas card had 3 photos. One of their new son by himself...adorable, one of the three of them, obviously taken recently, and one of precious Anna by herself...dressed in an angel costume. It was perfect. I want to encourage you to include a photo of Mav. It is so natural for you to want to do that, and you shouldn't feel any qualms about doing so. He will always be a part of your family, and not including him would feel too strange. Use one of those wide-eyed pictures you have posted here. It'll be perfect. Blessings to all of you this Christmas. --Ruth

Anonymous said...

Julie, Thanks for the wonderful dinner you brought us! We all enjoyed it and I am so blessed to finally meet you! What a joy! Have a Merry Christmas and your family will continue to be in my prayers!
Connie Benson
(Melissa Laiming's mother)

Juli said...

Ruth, Thanks so much for your advice. I've really been suffering from "analysis paralysis" and it just sometimes seems too overwhelming to even try. I've about given up. I was looking on the internet last night for something to write in the card. I usually write a letter, but I know I'm not up to that this year. I wanted a verse or something and the only thing I could come up with was the verse in Job about the Lord giveth and the Lord taketh away. Blessed be the name of the Lord. Then I think that sounds so sad. I'm sad, but I don't want to make everyone else sad. I'm about ready to throw my hands up and just skip this year. We didn't send one last year due to everything that was going on. Hope you all have a Merry Christmas!

Connie - It was so nice to meet you. Thank you for your prayers! Hope you all have a Merry Christmas!

Coach's Wife said...

I have been reading your blog for quite awhile now and I always love your posts. I am living in the Tuttle area, which is funny since I know you have family here, and I'm originally from Tecumseh! But the world keeps getting smaller. Reading this post I realized you were talking about Mr. Capps, who of course was my high school Vice Principal. I am married to a man named Greg and his grandma Grace was Roy's aunt! Okay seriously? LOL We live an hour from where I was born and raised and ended up married into a family related to someone from back home, who is related to someone I read about on the computer?? :) I hope you guys had as good of a Christmas as possible considering everything. Can't wait to see the cards and pics of the holidays!

Sarah Wallis