Friday, June 16, 2006

Life is Good

This update is for all you diehard Bailey's-Update-bloggers out there. I don't know if anyone is still reading this site or checking on it periodically, but if you are, this is for you:

Bailey is doing incredibly well! Her May appointment with Dr. Darragh went very well. Her PA pressures have been steady "60ish" since going home from the hospital last July but, in May, they had dropped to "45-to-50ish". Bailey and I wanted to skip down the hallway. Finally, a chance to celebrate! What's strange about this whole last year and a half is that, although everything went incredibly well for Bailey, there was really no one chance to cut loose, let our guard down, and celebrate. Even the news that they were removing the Berlin was the best news we could have hoped for, but it also brought with it another open heart surgery and a future led by a great big question mark. Bailey sailed through surgery and we left the hospital a week later, to go home for the first time in 6 months, but even then the celebration was hindered by recovery and that lingering question mark of the future. Every month since then brought doctor's appointments, echos, labs . . . they all went very well, but it wasn't until the May echo that Dr. Darragh said "I'm happy". We've waited 14 years to hear him say those words. We finally got our chance to celebrate.

Memorial Day weekend (a/k/a race weekend) came and brought with it an opportunity to hang out with Patrick Dempsey for 3 1/2 hours at Riley Hospital while he filmed his part of the documentary. How fun was that?! I took my camera expecting to take lots of pictures, but I only took 6. The problem was that we were sitting and standing right next to him talking about his movie, his family, getting him coffee from McDonalds and water from the cafeteria . . . it made it very awkward to take out a camera and say, "Hang on a minute, Patrick, I have to take some pictures of you." As I tell my good friend, Diane, the key to being a stalker is not to look like one. Ha!!! So, unfortunately, I didn't get lots of pictures like I had planned, but we did get to spend valuable time with him and I wouldn't exchange that for a lot of pictures any day.

It was very interesting to watch Dr. T, Dr. Cox, the Speedway guys and Patrick all work together writing, editing, and filming on the documentary. We still haven't seen any of it yet, but I tell ya, I don't know how I'll hold up seeing it, because I was teary-eyed just listening to Patrick's narrative during filming . . . even after the 30th taping of the same narration, the goosebumps just never went away. They say we get to see the documentary very soon and then they're going to send it to 20-20 for airing hopefully in the fall. There was a nice article in the Indianapolis Star-News that appeared race morning (titled "A Year in the Life of the Speedway"). They interviewed the Speedway guys and they were listing all their duties and projects they've done throughout the year and they say at the end that their most meaningful project has been with Bailey and the Berlin. It was very nice. (They made it public in that article that they plan on putting the documentary on 20-20.)

There is a little 6-month old girl on the Berlin at Riley right now, and Bailey and I were given an opportunity to meet with her parents. It was very nice to talk to them - we found ourselves saying things like, "Yeah! I felt like that too. And, when [this] happened, did you do [this]?" We laughted together and cried together. They had lots of questions for Bailey, most of which revolved around whether it was painful for her. Bailey showed them her scars, which we are very proud of. Dr. T mentioned to us once that they could do some reconstructive surgery later on if the scars bothered Bailey, but I, personally, don't ever want to erase them. They tell an incredibly powerful story. If, one day, Bailey begins to be embarrassed by them, it's nice to know that options exists, but right now, we're pretty proud of them and she's not afraid of showing them off to family and friends. I couldn't imaging choosing to get rid of them.

We got to go on our Florida trip this year! Josie was the only one who got to go last year, but we were all together this time. It was so funny! Little things pop up every once-in-a-while where Bailey will say, "Hey, look Mom! I can do this now! I couldn't do that before." For instance, she was swimming in the deep end of the pool when she realized that she could swim all the way to the bottom (6 feet). She didn't have enough air to do that before. It's exciting when she discovers things that come easier to her now. She has not had an asthma symptom since the day they put her on the Berlin a year and a half ago. All those years of not knowing if her asthma was heart-related was finally answered. It just makes me giggle. We play kickball in the back yard and she can run easier. She doesn't get out of breath carrying her book bags around school. And she's growing like a weed! We went summer clothes shopping when we realized none of the girls' shorts fit them (we haven't purchased summer clothes in 2 years), and Bailey discovered she wears Juniors now and not children's sizes! She was SOOOOO excited. All you ladies out there will cringe, but, yep, you guessed it. She's a size zero. Ha!! I wore a size zero once many, many years ago for about a week and a half.

Marissa and Josie are doing very well. Rissy soared through a season of softball with flying colors. She made a homerun on her last game, and not once during the season did she cry when anyone looked at her. Progress! Josie's taking the summer off from sports. She played about 9 months of basketball, so she's socializing with her friends and even has a boyfriend. Yuck! No, really, he seems like a very nice boy. But, yuck!

Tom is doing well. We've had our challenges. It's taken some adjusting coming back together as a family. I know that the experience changed me in ways that are good and in ways that have been challenging. For instance, I am so grateful for the little things in life now and feel I have my priorities in order. However, on the flip side, I have much less patience for those who don't seem to have their priorities in order. I don't have the stress at work that I used to have - deadlines are just that and not the life-or-death situations that I believed them to be before. Living through a real life-or-death situation made me able to identify the true life-or-death out there . . . and work isn't one of them. I enjoy my job now and don't go home with headaches anymore. Plus, I have the best boss in the world! She took such good care of us while we were in the hospital and takes good care of me at work. I appreciate and respect her and am very grateful to have her in my life. Thank you, Sue!

Tom and I have lived with a level of constant fear over Bailey's medical condition for our entire married life, and these last couple years have simply compounded that underlying fear. It's hard to nurture a marriage when such a major medical situation needs our constant attention. We had to divide ourselves into two separate functioning entities (me at the hospital with Bailey and Tom at home with the girls) for an extended period of time. I believe the fear of Bailey's unknown future after being released from the hospital, continued to make it difficult for us to begin focusing on our marriage when we were still so engrossed in tending to our children -- taking care of Bailey's medical needs while simultaneously keeping Josie and Marissa from feeling second-best. But now, being able to celebrate Bailey's "45-to-50ish" PA numbers, we're finding that we are comfortable focusing on our marriage. Things are going very well. I think we still have some things to work on, but one thing we know is that our marriage not only survived the last couple years but is coming back bigger and stronger than ever.

It still seems like the last couple years have been this whirlwind that just took us for the ride of our lives. We're still discovering how we've changed and have been affected as individuals and as a family -- for the better and for the not-so-better.

We continue to be unspeakably grateful for Dr. T, Dr. Darragh, and the entire medical team that helped our family through last year and continues to help us to this day. They are truly bright lights sent to us from Heaven, and I will be eternally grateful to God for hand-picking each and every one of them.

I hope you are having a great summer . . . we are!

Love to all,
Angie

3 Comments:

Blogger Janet Shelton said...

Yes Angie I am still checking in. I am so glad to see such a great update. Bailey has alway been so tiny. It will be wonderful to she see how tall she has grown. I am glad to hear the whole family had fun on vacation. Doug and I are going to Vegas in a couple of weeks leaving our boys home alone. At 20 & 16 years old, I know they will survive just fine. Look for Daniel at Meijer's in the Garden Center. He is tall 6'2" now with short hair but the same blue eyes and adorable smile. It is good to hear that Tom and you realize what an incredible realationship you have built with all the challenges that raising your girls has brought. I am looking forward to seeing the documentary. Please update us when it airs. I hope to catch up with you someday soon. Love Janet Shelton

12:23 PM  
Anonymous Anonymous said...

THANK YOU! for updating all of us. I'm so glad it's going so well! I can't imagine Bailey in Juniors...but, then I can't stand that Allie is getting older either.
I'm so curious to see the documentary, I can hardly wait to merge it with all the blog entries you've kept updated. I cannot imagine the strain you and Tom have felt over the years. I hope this year lets you just be together without so much intense stress. Lecia Overley

8:49 PM  
Anonymous Anonymous said...

Your so lucky to have those little ladies as your partners. God Bless you and your girls honey...I wish you all the luck and happiness of good health and spirits to you and your family.
Their lucky to have you too...

12:42 AM  

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