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Tuesday, June 11, 2013

Thank you & Thursday

Thank you all so much for the kind comments that you left after my last post. It was so comforting to read such supportive and accepting feedback. (And it seems that many of you appreciated the F-bombs! I love them too, but I am not planning that they will be regular in my posts.) Really, though, it just felt good to be super honest and put it all out there.

I think during Oakes life I thought that everything about him and his life was blog material. If you saw the images that were full of machines and tubes and bloody chest wounds and read the daily details about what was going on with him, then you know that I mostly offered as much as I had. When it came to Oakes, I usually offered 100%. When it came to my feelings, I was more reserved. I was honest, but I was very selective and usually the thoughts that I did share were delayed. I usually had to think things through before putting it all out there. And then with other parts of our story I was very private, like what was going on with Isla, and my marriage, even parts of our extended family.

I have talked to friends and even family, heck Greg has even commented that I am doing so great, or appear to be so strong and I think I have been doing really well, but I think in the last year, as thoughts have rushed through my head, or as I have moved through this grief I have constantly just contorted my face as I have thought, "Ugh, this is not even a little bit bloggable." Time after time, I just backed down to the idea of blogging.

I think that decision really was what I shared last week, it was wanting to protect everyone else, and it was me just sort of me flopping down on the couch and thinking, I'd rather watch The Bachelor than figure out how to share this yuck with anyone tonight. But I also think that is just who I am, that is the same something that just drove me to remain positive during Oakes' life and focus on the good stuff.

Several months ago I went to New York City and received an honor. I was named the Young Mother of the Year in the state of Missouri, by American Mothers Inc. In New York at this fancy schmancy weekend conference at the Waldorf Astoria and I met dozens of other women receiving awards relating to Motherhood. It was an amazing weekend for me. The entire award felt bittersweet. I was honored, but I feel like any and all amazingness having to do with motherhood that I have came from being Oakes' mother. Isla introduced me to Motherhood and laid the foundation, but it was Oakes that really pushed me and challenged me. So I went to this convention with a knot in my stomach, feeling nervous, a little guilty, and a little unsure about what the weekend would be about. Like I said, it turned out to be amazing. I was surrounded by women that were thrilled to be mothers. They were passionate, funny, encouraging, selfless and wise. There was one young mother that I met from Colorado who I really related to. She also lost a son. Seven years ago she was in her car with her three children and was hit by a teenager that was street racing. One son died instantly. Her youngest child was in a full body cast and has recovered fully, and then her third child had a traumatic brain injury and still has severe medical issues today. This Mother stood on stage giving a talk and said that after that accident she did not have a choice, but that she had to be strong. My eyes were full of tears as she spoke, I was heartbroken for her but in awe of her - she was so composed, so articulate, and she was breathing and carrying on seven years later. But when she said she did not have a choice I wanted to stand up, interrupt her talk and yell, "Oh yes you did have a choice! You could have hidden under the covers from day one, but you didn't!" Of course, I didn't yell that out, but I met her after she gave her talk and I told her that I strongly disagreed with her. I told her she definitely had a choice. She had a million choices. Most obvious, she had the choice to push forward, and then she also could have collapsed and melted and turned into mush.

But I could relate. I have always seen those choices in front of me. I have not wanted to make that choice to back down, or give up or crawl back in bed forever. I have not wanted to be that girl, or that mother. Years ago I was in therapy and my therapist told me that pain is inevitable, but suffering is options. I have learned through these last years that that is so true. I have wanted to see the good, cling to the hope, and suck as much beauty out of every single day as I could. Especially, ESPECIALLY when I knew that Oakes would not live forever.

I am sure that I shared this before, but before having Oakes listed for the lung transplant one of the transplant coordinators who we met with looked me in the eye and told us, that the transplant was not a cure for what Oakes had. We would be trading issues. His new pulmonary veins would be beautiful, but we would have a whole list of new health issues. And she was compassionate but firm when she said, "You will bury your son one day, it is just a matter of when."

Whoa. It is sort of funny now, and I can share this now that I am back: I peed in my pants a little when she said this.

When she told me that the world sort of slowed down. It probably took me 3 or 4 days to even begin to let that sink in. I mean, I had said, "Whatever! Sure, great, I get it, where do I sign, I want him listed for lungs as soon as possible!" I was as much on board as I could be. (And completely clueless as to what was coming, thank God!) But over the next couple of days I began to wrap my brain about burying my child. And the fact that it was going to happen. I thought for sure Oakes would surprise everyone and live into adulthood. I was imagining him playing baseball at St. Louis University High School like his father did. I pictured myself sitting on those bleachers and cheering him on. I was confident that my little Oakesie would change the statistics and be that one fluke kid that just rocked the lung transplant world. And at the same time as I was believing in the impossible, it was as if the lenses on my glasses were switched out with this unbelievable prescription that allowed me to see truth and beauty at its most simplest form. This new vision that I was given filtered out the crap. Things that would have normally bugged the crud out of me, we not even on my radar. I could let go of so much insignificant noise throughout any given day. Because through those new lenses, I saw what was important. I had my son that day. He was breathing. I got a smile from him. I watched his chest rise and fall as he slept. I watched Isla smile at him and play with him. I get to stick my nose up to him and get a good whiff or his baby boy + sweaty boy smell.  He held my hand. I got to hold him and feel the weight of his body in my arms and on my lap - he was real, he was with me. And everything else was just in the periphery.

A big part of this new gifted perspective is how the Foundation came to be. I get it that when a child is admitted to a hospital that a families world can come crashing down in the biggest way. With those glasses on where you only see the beauty the other, everyday stuff doesn't carry the weight that it normally does. I got it how families could loose every thing. When you are busy soaking up the outline of your baby's face and burying your nose in their neck just negotiating with God for one more day, you don't give a crap about making sure your mortgage payment is made, or if the grass is cut. You don't care that you might lose your job, you don't even care if you have slept or bathed or eaten. None of those are necessities. Those are not a parents dream - to be timely with your bills. Not. Even. A little bit.

I can't tell you how many times I logged onto facebook during Oakes' life. Just to sort of check in, and touch base with the rest of the world. And so often I would scan posts and just sort of glaze over. People were posting their drama; conflicts within their families, how their day was ruined because their dishwasher wasn't working, how irate someone on the highway made them, etc. I would just think, "These are not problems, people!" I am begging God for pee, fighting anti-body mediated rejection and other matters that are stumping our ivy league educated doctors. My thought to my facebook friends, "BITE it fools - relax, call a plumber, and consider taking the bus!" I guess this is all about perspective, so I wish I could share those amazing lenses with the world!

Right after Oakes died, I posted and asked everyone to tell us what you learned from Oakes. (In case you haven't done that yet, it is not too late: We still get occasional emails. I don't think I have responded to any of them yet, but I have read them all, some numerous times and I cherish them. Each one. One of the first ones that I read was from a family friend names Bridgett. This is part of her email:

I am a working mother of two. My husband works two full time jobs to provide us a better life. Most of the time I am caring for my household duties and childern by myself. I was always worried about things like getting the laundry done, keeping the house looking nice, etc. Around the time Oakes had his lung transplant I did some reflecting. I realized I was doing these chores and my kids were not getting my attention. I felt horrible! How could I put those things first? I thought of Becky, Greg and Isla visiting Oakes everyday and saw sweet pictures of Isla in bed with her brother. I needed to change. I made changes, I do what I can when I can, if I have to stay up until midnight to do my chores while they sleep, so what! My kids are happier, I am happier and I am forever greatful to Oakes for teraching me this simple lesson.. Cherish every minute you can, kids LOVE undivided attention!!!
Thank You Oakes!

I remember stilling in my living room reading her email. Oakes had been gone only days. As I read her email, my eyes full of tears, I had this peaceful, comfortable feeling. It was as if I was being wrapped in awe. I thought, Bridget got it. She heard Oakes. She learned what I learned. She felt those little finger when she held her kids hands to cross the street and knew that they are a gift.


Last Thursday.
The brief update on Thursday was that it really was an OK day, even a good day.

When I woke up, I rolled over to see Isla in-between Greg and I. And Greg was waking up with tears in his eyes. I laid there sort of waking up, watching him and feeling his ache. Within minutes Isla was waking up and was concerned about Greg being teary. We explained that one year ago, Oakes died, his body stopped working. We explained that we were both sad, and that we both missed him. Greg asked Isla if she missed Oakes, and she quickly and confidently said, "No." Greg and I glanced at each other and then back to her, and as she was climbing out from under the cover to start her day, she simply said, "I don't miss Oakesie, cause he is always in my heart!" Thank you, Isla for your 4 year old wisdom! At that, Greg and I both peeled the covers back and carried on with June 6, 2013.

Isla went to swim camp. Greg had work to do. I had some alone time and I went to two different nurseries looking for just the perfect Oak leaf hydrangeas to plant in our yard. I ended up buying three.
All day long, my phone was ringing and buzzing as sweet messages poured in from every messaging and social media group. Just having posted my last post days before, my favorite text came from a girlfriend who kept it real for me. Her text: : "I just yelled, FUCK IT really loud!" My text back, "Oooo, fun...I'm gonna do it I go....."

Around 3pm we headed down to SLCH to visit Oakes tree. By then I was just sort of pissy. I was hot and irritated with both Isla and Greg. And then we got there and there was debris and trash that had blown onto the grass around his tree. After collecting several handfuls of candy wrappers and junk I was able to stop and look at that tree. I was still pissy and thought simply, "I'd rather have my son." Some tears came, the missing him flooded in, but then we discovered a note that one of his nurses left at the base of his tree. My heart just swelled. He is SO loved. And so are we. Next, Isla insisted on getting a wet wipe from the car to clean the bird poop off of the plaque in front of his tree. Then a sweet passer-by asked if she could take a picture of us. After the picture we went up to the garden. We saw several friends/staff on the way up which was perfect. Once in the garden we released a heart shaped balloon that the three of us wrote on, and we just sat around and talked about fun memories. A bird landed next to us and sang us a song. There was a cool breeze and the sky was just starting to change colors as the sun was starting to set. A helicopter landed on the roof right next to us. It was beautiful but real. Then we all decided we were hungry and we wanted to leave. It was all OK.

We ate at Pasteria, and then headed home. And when we pulled into the driveway, we notice that our front yard was full of red balloons. When we got out to take a closer look, we discovered the balloons were in the shape of a heart. It was perfection. Our sweet friends were giving us the biggest hug and biggest dose of something special on a day when we really needed it. We sat on the front porch for a couple of hours. Neighbors came over to check out the front yard installation, we ate ice cream and drank wine. We also saw the first fireflies of the summer.

I got into bed smiling. The day had been OK. It had even been really good at times. There were little Oakesie signs everywhere. He was with is, loving us in way that only he can. Of course, the significance of the day is dreadful, but I was surprised to feel a bit happy even proud that day. We had made it. We made it one year. We are doing OK and figuring this out.

 Cleaning poop.

"this much!"

(Thank you Amy Rush, Heidi Drexler - your 4 monkeys & the Stissers! We red heart balloon you right back!)


  1. waaaaahhhh! great post. full of tears as always. holding your hand across these many miles and sending heartstrings after you! we love you all and Oakesie too!

  2. Crying tears of sadness and joy. You made it one year and you all are loved. Baby Oakes sure is loved and he loves you all. Know that you are in my prayers always!!

  3. Wow. Blown away, again. (And I REALLY have to stop reading your blog posts at work...) I love, love, LOVE that you acknowledged that we DO have a choice. Being strong is a choice. Even now, two years later (for me), I sometimes struggle to make the choice to get out of bed and face the day. Some days the only way to make that choice is to remember our fierce, strong babies who fought hard every day and living my life in a way that honors them. God bless Isla and her sweet, sensitive soul and friends who keep it real.
    MI love, as always,

  4. You little snot! This should have came with a warning to not read at work! I am in the bathroom crying at work! I can't thank you enough for bringing Oakes into this world to teach me this lesson! Sometimes when my kids call for me (and it IS every 30 seconds) and I yell "IN A MINUTE!" I think of Oakes and I try to make that minute more like 30 seconds! I am forever grateful to Oakes and your family!