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Tuesday, June 19, 2012

Update & Eulogies

Hi friends.

It is Tuesday night, Greg is back to work, and Isla and I have been staying busy since all of our family left town. So far, we all seem to be OK.

I think we are all floating a bit, still a little high from the weekend, still feeling the outpouring of love. Both make the loss of sweet Oakes a bit more easy.

We have all had our weepy moments. Even thought our lives have been completely centered around Oakes these past 15 months, it is almost as thought we have been sheltered a bit since he hasn't been home for so long. We didn't have a room ready for him at the time that he passed and we haven't had him here in so long that there aren't holes in our house, or the way that we live. It is odd to not get up in the morning and head to the hospital. I miss so much about the hospital, especially all of our dear friends there, but I have been loving my time with Isla. On Sunday, Isla and I went to the swimming pool in the afternoon. We were there for about 3 hours. Our pool is a zero entry pool, so I just sat in the water and Isla jumped around me, climbed on me, and just played and played. We were both in heaven. While I sat there I thought, there probably hasn't been a day in a long time that she truly had my undivided attention, and I could tell Isla was thinking the same time.

Like I mentioned, we are floating a bit from the weekend. We had an enormous amount of friends and family that came in town for Oakes mass and celebration. The mass itself was perfect. It was amazing. It felt like just the kind of mass we should have had for Oakes. It was very much a children's liturgy. There were children singing, children bring up flowers to Mary during the offertory, we played some of the lullaby's that we often played for Oakes and we sang some of Isla's favorite songs at the end of mass. Our sweet friend Ellen, was a reader and so was nurse Ali, whom Oakes and all of the Ortyls love. Oakes' aunts and uncles plus Chaplain Connie from SLCH read the petitions, and Greg and I eulogized Oakes. After mass, we changed our clothes and went straight to the park for the celebration, which like the mass, felt just perfect. It was a bit warm, but other than that, it was just the kind of party that Oakes would have wanted. We think we had close to 400 people there, all smiling, talking about Oakes, our family, and how their lives have been touched by us. It was an exhausting day for Greg and I, but holy, amazing, inspiring and reaffirming.

I will post pictures & more details soon.

But for now, here are the eulogys that Greg and I shared on Saturday.

Greg:
First and foremost, thank you all for taking time out of your summertime Saturday afternoon to join us in celebrating our son’s inspirational life.

What a crazy, intense, stressful, frustrating, draining, joyful, inspiring twenty months.  It feels like five years ago, but it was just twenty months ago that my wife and I went to have an ultrasound for her twenty-week check-up.  This is a magical day – you find out whether you’re going to have a baby boy or a baby girl, if you’re so inclined to find out, which we were.  So we brought our adorable daughter, Isla, who was just 17 months old at the time, figuring that we could have her share in such a special moment in all of our lives.  Within two hours, our lives changed forever.  Our friends and families’ lives changed forever and their friends and families lives too and so on and so on.  You can just look around this church for validation of that. 

Today, I wanted to talk about several people or groups of people – my son, Oakes; my family; our extended family at the CICU; and my wife, Becky.  I’m hoping to focus on the lesser-known stories that surrounded Oakes and his magical life.  Consider me the opening band today.  I’m just warming you up for the headliner to follow.  Sometimes, very rarely, an opening band can actually outperform the headliner band.  One such instance of this was here in St. Louis at the Scottrade Center on July 2, 1996 when Alice In Chains, the fiery rock band from Seattle opened up for and completely humiliated the old and crusty band KISS, the headliner strictly by name only.  This will most definitely NOT be one of those times.  I know my role here.  I am a humble opening band for my much better half.

First my son, Oakes.  I don’t have enough time here today, nor do I have enough tears left to tell you all there is to know about Oakes.  For those who may not know, over the fifteen months that Oakes was alive, he endured two open-heart surgeries, a reconstruction of his trachea, a lung transplant, dozens of heart catheterizations, chemotherapy-type treatments, blood and platelet tranfusions, peritoneal dialysis and many other procedures.  

My son was a warrior; an old-soul willing to take on any fight, never giving in and never one to complain.  My son was miraculous and made defying the odds an occurrence so common that we all began to expect another miracle at every turn.  He was the cutest, most beautiful little boy, Papa’s turkey, with the brightest smile.  He was a beast….he was always sweating, always tooting and always needing  a diaper change.  He had broad shoulders and a tiny hiney.  He loved biting on his right thumb.  He loved the band Coldplay.  He willed the Cardinals to their comeback and 12th World Championship.  He loved the Blues too, but there was nothing he could do there.  He loved to paint and loved his nurses!  He loved everyone and everyone loved him. 

I know we have many blog-followers here and many who were on my email distributions throughout his life, so you probably feel like you know Oakes even though you probably have never met him. He had that type of gripping, memorable, contagious personality.  He was special.  And in spite of his trials, he managed to teach all of us very important lessons….lessons my family and I we are trying to capture via an email account we created named LessonsFromOakes@gmail.com, so please, if Oakes moved you, let us know how.  Oakes certainly made a lasting impact in the world and with me in particular.  Today, I am a more patient man than I was in March 2011.  I am a better brother.  I am a better son.  I am a better husband.  I am a better father.  I am a better friend.  I’m simply a much better person for having Oakesie in my life. 

And my family, no doubt, is a better family for having all of you in our lives.  We have been blessed with a tremendous support system starting with Oakes’ grandparents.  Connie and Dale Moore, Becky’s mother and stepfather, made countless trips in from Oklahoma over the last 15 months to help with Isla, clean the house, make dinner, grab groceries, do laundry, help with keeping tabs on Oakes at the hospital.  Connie would get up hours before anyone else and drive in to the hospital to listen to the doctors’ rounds so she could hear the latest with Oakesie and would report back to us.  It was so relaxing for me and Becky to know that Connie was there at the hospital and caring for our little man just as much as we would.  Dale, meanwhile, has spent the last year plus basically re-building our house.  I can’t begin to name all of the projects that Dale has done in that time, but living in a 100 year old home, trust me, there were ALWAYS projects waiting for him.  He did them all, perfectly and, no matter how hard the work was, he never seemed to be tired.  Bill Fox and Jane Christine, Becky’s father and stepmother, visited as well.  They were a mere 15 hour drive away in Wilmington, NC, but whenever things got tense, they were in the car before we could even tell them how tense.  Last summer, they took Isla with them to Wisconsin for ten days.  It was the longest we had been away from Isla, but it was a much-needed break at the time.  Every few weeks, one of Jan’s blankets for Oakes or a sundress for Isla would show up.  Greg and Jane Ortyl, my mother and father, must have watched Isla 200 times it seems.  I was working, Becky was at the hospital and my mom and dad would LOVE to come to our house and play all day long with Isla.  Touchingly, Isla will always be able to talk about how her grandma and grandpa Ortyl taught her what a chicken mcnugget was.  Our siblings were always willing to help.  Several of them spent days or weeks with us helping with Isla, the hospital and general stuff around the house. 

Our friends.  I cannot tell you how humbling the outpouring of love and support has been from all of our friends throughout this journey.  One of the amazing lessons Oakes taught me was how important friends can be.  You go through life, speeding along, going to work, paying bills and along the way you make a friend or two.  One day, you wake up, your son is fighting for his life in the CICU and you realize that you have done one hell of a job making friends.  They bake you cakes.  They make you pasta.  They bring food to your house.  They send you cards.  They text you.  They Facebook you.  They send your daughter toys.  They babysit your daughter.  They take your daughter to school and pick her up and feed her lunch.  They bring you Diet Coke….in a bottle!  They visit your sick son when you are out of town.  They organize candlelight vigils.  They donate their time and talents to make food to donate to your foundation.  They donate their house in Holland so you can raise money for your foundation.  They donate condos, houses, sporting tickets, autographed memorabilia, various services, golf outings….all so you can raise more money to help other families because they know it’s important to you.  And they ask for nothing in return.  We have friends here today who have traveled in from Illinois, Kansas, Michigan, Kentucky, Georgia, New Jersey, North Carolina, Pennsylvania, Texas, Oklahoma, Washington state, Washington D.C., Colorado and California.  The outpouring of love and support is the most humbling experience we’ve ever been through and it always will be.  Thank you all for your friendship.

Speaking of friends, we have made new friends thank to Oakes.  Some of those most special friends are our hospital friends, our extended family.  They were like family to us.  Selfless, caring, compassionate, delicate, empathetic, funny, brilliant, talented – these are just some of the words to describe the staff at St. Louis Children’s Hospital.  They were a constant throughout Oakes’ life.  Always there, always willing to help and always with a kind smile on their face or the sweetest words of comfort.  I feel indebted to them for giving me 15 months with my Oakesie.  They loved him ALMOST as much as we did and they deserve to be recognized for what they do on a daily basis.
Then there is my wife.  My strong, loving, beautiful wife.  The amount of love that the people sitting in this church have for my wife is impossible to measure.  I think the CICU nursing staff may erect a plaque in her honor.  They have already given her an honorary nursing certificate for national nurse appreciation day a couple months back.

There is no doubt in my mind that Becky was the ROCK, the foundation of our family throughout Oakes’ life.  I have shown a tendency to be good at compartmentalizing things in my life and I had the “blessing” of working throughout most of the 15 months.  My company is in a start-up phase meaning significant travel and lots of hours.  But work was my unintentional escape; it allowed me to forget about the issue of the minute or the hour.  Becky, on the other hand, was on the front lines every single day.  First, she had to figure out what to do with Isla every day.  Have my mom watch her, send her to a friend’s house or bring her along.  The nurses fell in love with my wife and Isla.  Becky would be in the hospital by mid-morning every day.  She would get updates from cardiologists, CICU attending physicians, nephrologists, pulmonologists, speech therapists, respiratory therapists, neurologists, nurses of all kinds and have to make some sense of it all.  She’d change Oakes’ diapers, give him baths, change his trach ties (sounds easier than it is!), suction goop from his lungs and make sure he was playing with developmental toys, watching fun movies and decorated his room.  And geez, did she decorate his room.  It was the most decorated, loving room the CICU had ever seen.  Moving rooms was a several-hour affair because of all the pictures and decorations on all four walls and the door.

Though going to the CICU to visit her extremely sick son, Becky would walk the halls and greet everyone with a smile, familiar or not.  Every single day, whether Oakes was trending up or trending down, Becky managed to deal with everyone with the utmost grace and elegance.  Every person in that CICU will tell you that.  No one ever knew what kind of day Oakes’ was having based on her.  She would rarely show it.  When I would relieve her in the afternoon or evening, we’d kiss good bye and she’d walk out of Oakes’ room to head toward the car.  Ten minutes later, I’d look down the hall and there was Becky, still not to the elevator, chit-chatting with whomever happened to stop her to say hello and EVERYONE wanted to say hello to Becky.  I guarantee every single person, including the other parents, knew who she was.  She knew everyone’s name, from the head surgeon to the janitor and parking garage attendant.  She knew what was going on in their lives.  The CICU was her life for those fifteen months.  I was just some dude who sorta looked familiar walking down the hall, but Becky was Becky, Oakes’ mom, the “she’s so awesome” Becky. 

It’s because of Becky that we can honestly say that Oakes had the most “normal and special” life he could have ever possibly had considering the hand he was dealt.  She made sure he had a blowout birthday party, she built a fireplace out of cardboard and hung it on his door so we could put Christmas gifts under it, she found the most unique mobiles to hang over his head so he would have something fun to stare it, she pushed until we were given permission to take Oakes to the rooftop garden where we got some unforgettable pictures, she brought a train set and had him and Isla play with it on the ground, she made sure that Isla was even able to hold him one day, which he absolutely LOVED.  Nothing got by Becky.  She was always asking questions that didn’t have easy answers and she always had the best interest of Oakes in mind. 

There is a phrase about “outkicking your coverage” when it comes to your spouse.  There is no doubt that I outkicked my coverage in marrying Becky.  I treasure her and love her dearly and would not have picked any other mother for my precious Oakes and I know he feels the same. 

So I added it up the other day.  Oakes spent 453 days on this earth.  March 10, 2011 to June 6, 2012.  435 of those 453 days were spent in the hospital, most of which were in the cardiac ICU.  435 of 453. That’s 96% of his life spent in a hospital bed, hooked up to wires and tubes and pumps and vents.  But the CICU nurses will tell you, whenever he could muster it, he would light up the room with one of his smiles and would shake his head left to right with his thumb in his mouth to express his excitement at one of his favorite nurses coming in or his favorite Coldplay CD coming on or seeing his big sister Isla climbing bedside.  Just 18 days at home.  17 of those days came in May 2011 after his first successful open-heart surgery while one of those days came during his wait to find a lung donor in July.  The one day absolutely flew by.  But those 17 days in last May felt like six months.  There was so much that was unfamiliar to us and it was so tense and scary every day and night.  Never a chance to exhale.  There were wires on his head, wires on his foot, a feeding tube in his nose taped to his cheeks, a small cannula delivering oxygen through his nostrils also taped to his cheeks, there were monitors and syringes and lots of medicine.  I remember, more than once, being frustrated and impatient with all the wires because it would be a mess if you accidentally pulled one out while trying to shush him to sleep or hold him close.  I have guilt today because of the frustration I felt while dealing with all of those wires and tubes.  And I would obviously give anything to have to deal with those wires and tubes today.  The only time I have been able to hold him, wire free and tube free, was Wednesday night, minutes after he had passed.  Becky handed him to me and I was able to pull him into me, bear hug him and rock him in my arms trying to let him feel how much I loved him.  He was on his way to heaven already, but that was heaven for me.  It didn’t make the reality of the moment any easier to deal with, but it was a moment I won’t forget and I know he felt my hug and felt my love through all the sedation.

And I will think of him every day of my life and I will love him and miss him forever.  I love you Oakesie.

And now, for your headliner……


Becky: 
Ever since we found out that Oakes would be born with a rare and complicated heart defect, as many of you know, we have been fighting an exhausting but so very important and rewarding battle for and with our son.

As soon as we began to digest the fact that our innocent baby would be born with serious medical needs, Greg and I started to ask each other, “Why?, Why us, why our family, and why our baby?”

I wanted to share with you an event and then an idea that has brought me so much comfort as we have stood by Oakes’ side through his short little life. They have made the good days great and the gut wrenching days seem tolerable. 

First, the event. When I was pregnant with Oakes I had a dream about the Virgin Mary. The dream was very simple. In the dream we were together in a park. She placed her hand on my arm, looked me in the eyes, smiled and calmly said, “This baby is going to be just fine” I have thought of her calm words so often. If one mother was going to tell me that my son would be “just fine” and I would actually have listened to her, it would have had to be Mary. I have been mad at Mary at times, looking at Oakes struggling and thinking, this is NOT “just fine”, and later when we learned that Oakes would need new lungs I wanted to slam my fist on the table plead my case with our doctors and say, “No, but Mary told me he would be just fine! It took me some time to realizing she did not say he would live to be 82, she just told me he’d be fine, so after awhile I was able let go of some of my worry and just have faith, that she would be taking care of him in a way that I could not.  I have called on Mary often to take my worries, to get us just one more miracle, to stay with Oakes when I could not, and to shower him in her motherly love. And I have no doubt that she has done all of these things for me.

Next, the idea that has brought me comfort, and I hope I don’t loose you: I would like to believe that we all have a say in the life that we are born into. So in Oakes case, I imagine that Oakes the spirit would have had a conversation and negotiation with God in designing his life.

I would like to believe that Oakes is an old soul. Oakes, like in this lifetime, has been the most brave warrior, a pioneer, a skilled teacher, a big thinker, a loyal and dedicated friend, a lover, and a little bit of a troublemaker. He is that person that enters a room and everyone is captivated by his presence. Everyone loves him and in the most fierce way, he LOVES everyone right back.

So I can only imagine this conversation that was had between Oakes the Old Soul and God.

First, they would have agreed that Oakes would be going to earth to teach. He would do this in many ways, and effect many people. He would teach the medical community by day and teach his friends and family at night. They would have agreed that he would have a CHD with a long list of complications and smaller issues for his medical team, and that he would teach his friends and family all about LOVE, with subcategories including: patients, perseverance, taking care of others, and just the art of slowing down, taking a deep breath and appreciating life.

Next Oakes would have given God his wish list for what he thought he would need during this life. He would have requested things like….
1.    a Pappa whose DNA would guarantee that he’d have the potential to be as big and as strong as possible.
2.    He would need a Pappa that would get a little rowdy with him, talk sports, explain Cardinals baseball to him, and describe in detail hole #7 at Pebble Beach
3.    In contrast he would need a Momma that would provide lots of peace and quiet, sweet snuggles and smooches galore.
4.    Oakes would have requested to have a Momma that would be at his side as much as possible. She would need to be strong, with a reserve of untapped strength, and she would need to be intelligent so she could keep up with the complicated little costume that he was about to put on.
5.    She would need to have endurance, patients, and a sense of humor have made the list too. The last thing he would have wanted was some crazy lady at his side that just couldn’t hold it together!
6.    He would need to inherit qualities like drive, determination, dedication and perseverance
7.    He would need parents that would get him, would be dedicated to him and would listen to him even if he couldn’t physically speak.
8.    And if you ever saw Oakes interacting with a female nurses or visitor you would know that on this list was a request to be super cute. Oakes would have negotiated keenly that if he was signing up to spend his entire life in the hospital he would need to get the ladies to find him irresistible so they would love on him and smooch him daily.

I think God considered all of these requests, found them extremely reasonable, and gave Oakes even more than he thought he would need.

From experience God knew that Oakes would have better odds of teaching and loving if he had an amazing sibling to cheer him on.

God also knew that this family would need the most comforting, dedicated and loving support system. This family would need friends and family that would come running to help in a moments notice. God knows that Pediatric hospitals are staffed with his finest, but he needed to make sure that his Wise Old Oakes would be cared for by the best of the best.

As the negotiations were coming to a close, the actual family search would have begun and Oakes would have started to pour through an earthly family database.  I picture lists of families that Oakes was to consider and a kind of 3 dimensional hologram of earth with swelling little red hearts scattered all over it, each to represent potential families.

Maybe there was a sort of power point presentation of potential families and a committee voted on Oakes placement, maybe it was a lottery of sorts or we were simply next in line on some heavenly list, but I would like to think Oakes truly singled us out and picked us. That on paper we looked great to both God and Oakes, and after a quick observation of the Ortyl family in action, Oakes just knew that we were the ones. We were the ones that would give him just what he needed. We could help him teach the medical community about Truncus arteriosis, complete tracheal rings, about pediatric bilateral lung transpalnts, and antibody mediated rejection. He would teach them about pheresis, and blood transfusions, about crazy unexplained fevers, and dozens of other medical issues.

Yes, we could help Oakes teach his medical lessons, but even more, Oakes knew that we would help him teach others about LOVE. I can just picture Oakes watching his Pappa at work. He would have done a small fist pump, and said, I need that drive, that determination, and that passion. He would have seen How Greg adores his girls and he would have quickly wanted to have someone love him the same way. Inevitably he would have seen me log into my blog and in excitement he would have done what Isla & Dora the Explorer would call a “super jump”, knowing that I would blab on and on to the world about every breath he took, about every cell that divided in his body and just how amazing I thought he was. And then he’d peer into my filthy Mom purse and see my fancy camera, covered in cheerio dust, loaded with hundreds of pictures of Isla all taken in just one afternoon. After looking at just Greg and myself, Oakes would have known that he had hit the jackpot!

And then he would have observed Isla. He would have studied her quickly and it would have been a kind of love at first sight. He would have known that she would be the companion that he would need. He would have known that she would be gentle with him and sweet when he needed it, and then she would literally shake the crib on other days. He knew that she would wake up and her first words would be, “lets go see Oat!” She would climb in the crib with him, sing to him, feed him, read him books, blow bubbles for him, and teach him to jump and dance. She would explain to him what mac and cheese tasted like, she would explain the concept of potty training to him, and would try to teach him to count. She would listen to his knees with a stethoscope and cover him in band aids and stickers daily. She would see beyond the tubes and tape and love, call him Bubby, and baby talk to him a high pitch voice. (“Oh, Hi Bubby!”) She would without a doubt bring the most joy to his days. She would be his best friend, his biggest supporter, and one of the first to remind him that his brave fight was worth fighting for.

So the rest of Oakes story with us you know. He was born with serious medical needs. We gave him the best medical care that we could. We showed up every day to support him, love him, love on him, play with him, teach him, challenge him, snuggle with him, sing to him, advocate for him, and give him the best earthly experience that we could. We shared his story with you and the world; we started a foundation in his name. Last week we let him go and now today we honor and celebrate him.

I do not have words to adequately convey the sadness that I feel that Oakes, is not here on earth with me anymore. I have believed with every cell in my being for so long that he would live an amazingly long life, and he and Isla would have many years together. I am crushed that that dream is gone, but at the same time I have tremendous peace knowing that Oakes does not have to fight anymore. Every night before I would go to sleep these past 15 months, I would sit on the edge of my bed and call the CICU, ask to speak to his nurse and get an update on Oakes. "Hi, It's Becky again. How is he doing, is he asleep yet? What are his numbers like? What is the plan for the night, are we making any changes?"

The first few nights after he died I sat on the edge of my bed and just cried. Cried because he was gone and there would be no more updates. But at the same time there is such peace. I know where he is, and I know how he is doing.

He is perfect and he is free. I have been picturing him completely healthy, running through heaven wearing nothing but a diaper and the cutest, european looking, blue, little gym shoes. There are no leads connecting him to machines, no tubes pumping medicine into him, no trach, no vent, no equipment or support. He doesn’t even suck his thumb anymore, because there is no need for him to comfort himself. There are no more nurses fussing over him, or doctors listening to him breath. Instead he would have been surrounded by friends and family that were overjoyed to have him. And of course, the Virgin Mary is there with him, watching out for him like she has always done and loving on him for me. I have been picturing him spending lots of time in gardens, playing with animals, running, running, and running some more. Breathing with angel lungs must feel amazing. And having a prefect little heart must feel great too. With a perfect heart, comes perfect perfusion, his kidneys are working better than ever, and since he is a bit of a trouble making little boy, I imagine that when he takes a break from all of that running he is peeing in those beautiful heavenly gardens.

I picture him in that same lack of an outfit busy at St. Louis Children’s hospital. He is now climbing into the cribs of children that are there now, encouraging them, and supporting them just we like Isla did for him. I have no doubt he will be with the staff in the OR, the Cath lab and the Echo lab. He will be holding the hands of children that are tired, and bring smiles to the faces of children that are scared. When they least expect it he will climb into the laps of his favorite nurses and smooch them on the cheek and hug their necks. He will comfort them when they are overwhelmed and guide them when they are stressed. He will ride on the top of Christy’s music cart and ‘super jump’ from the top of it when she stops to play music. He will spend plenty of time in the rooftop garden, swinging, running, watching the fish, and participating in every magnificent sunrise and sunset. I feel confident of this because I know that he has already been spending lots of time with us, he has been visiting us and loving us and reassuring us that he really is just fine.

To finish, Oakes entry into heaven would have been a grand celebration. There would have been angels and saints galore. He would have been carried in by Dr. Jennifer Cole and would have been greeted by the most excited group of family and friends. In the front of that group would have been a significant gathering of little ones, mostly made up of children that we considered friends of Oakes, who passed while Oakes was in the ICU. Phoebe and Ronan, Noah, Gus, Dominic, Hunter, Christopher, Jaleah, Jenna and right in the middle would have been little Elizabeth who would be dressed in pink from head to toe ready to give her sweet Oakesie a smooch. And there would be 3 extra special angles there, Angles that I know have been watching Oakes closely. I do not know the names of these angels. Two of the angels were children whose heart valves were given to Oakes, and the last was the child who’s lungs were given to Oakes.

After the party, Oakes and God would have met up for a little debriefing to discuss Oakes time on earth. I think God would have been beaming more than usual because he would have been so very pleased. He would have been proud that Oakes endured what he did, and so happy that he taught so much in such a short time. And When Oakes learned that he had been alive for 455 days -  1 year, 2 months and 28 days, he would have been stunned. Stunned that he was able to fight for so long, given all of the issues he had agreed to. I think Oakes would have shared that we all carried him along, that he in fact felt the deep breaths that we were sending him, the healing & comforting tugs on his heart strings, and that he felt peace from the powerful vortex that he gazed into everynight, as if it were a mobile hanging overhead. He would have confessed that he didn’t accomplish all that he did because he was mighty, but he accomplished all of it because we loved him so very much.

Greg and Isla and I thank you all for your love. We are grateful for your support. We could not have endured these last 15 months without you.

Even thought there will not be day by day updates on the blog about Oakes and his progress, I will continue to write and share about the Ortyls and the legacy that Oakes has left behind.

And please know, that as you have prayed for Oakes, he now prays for you. He is now in heaven, an adorable, happy baby in diapers, smooching the girls, running with the cheetahs, making everyone smile and laugh, but when there is praying to be done, he has some pull and he knows how to negotiate some pretty amazing miracles, and because of that, we too will be just fine.



(An amazing and unedited image of Father Brown on the alter during mass - to me this just seems to sum up the tone of mass. This Image was taken by Heidi Drexler. I heart Heidi. Big time. Check out her website for a few more images from Saturday.

And a favorite FB post from Nurse Ali at the end of the day:

Today was a day of inspiration... A day where angels surrounded me, a day where hope was felt, a day where I witnessed what true love can do... Today was a day that changes people.


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On Sunday night after we got Isla in bed, Greg asked me, "So what now?" And despite all that has been going on in our lives, I had an interest to watch The Real Housewives of New York. I said, "I think I am going to go watch some trash TV and unwind." He stopped me and said, "No, with our lives, what are we going to do? What are you going to do, what do you want to do?' We both sat down and just exhaled. I shared with him, I'd love for the 3 of us to go on a vacation. I'd love to just do nothing for some time, and figure out how we will all just settle back in. There are some projects around the house that I want to do, and I am going to dig into the long list of ideas that I have for the foundation. I'd also like to write a book or two, especially while Oakes' life is so fresh in my head. I'd like to drink more wine, get a few massages, cook a few meals in my kitchen, get Isla to eat some vegetables, pull weeds in my garden, host a girls night out, join a book club, etc. but the reality is that my days have been pretty slow so far, and that feels right.

Isla is doing OK too. She asks lots of questions about Oakes, which is somehow comforting. I have explained over and over that he is dead. He won't be coming home and we won't go to the hospital to see him. We have been and will meet with an expressive therapist from the hospital for Isla. She assured me to be open and honest and that Isla will ask the same questions over and over, likely for a long time. So, we have explained that when Oakes was born he was very sick, that is why he has had to stay at the hospital all of the time. And that is why he had all of the tube and tape and the medicine. I assured her that the doctors and nurses and Greg and I did everything to make him better, but he was just too sick and his body stopped working. She is usually Ok with my explanations, and like any topic that we are discussing, she usually changes the subject quickly,  like: "Yeah, Oats is dead. Can I have a cheese stick?"

We will keep the posts coming. We have so much to share, still.

We thank you all for your support, your love and prayers. Saturday came together in a beautiful way, parts of the day just fell into place, but there were also a dozen of friends that helped us out tremendously - thank you all again.

XOXO, Becky

Wednesday, June 13, 2012

Oakes Lee Ortyl Obituary

Good evening friends and family.  We wanted to let you all know that we have been working on an obituary for our little man.  Neither of us have done this before and were knocked on the floor when the first quote came back at over $1,000!!  We had NO IDEA it cost that much.  So I pared it down a bit and have something that works.  It will be running in the St. Louis Post-Dispatch tomorrow (Thursday, June 14, 2012) and will have my favorite picture ever of Isla and Oakes.  Here is the text:


Oakes Lee Ortyl, 15 months old, passed peacefully into heaven while in the loving arms of his parents on June 6, 2012 at St. Louis Children’s Hospital in St. Louis, Missouri.  Oakes was born on March 10, 2011 in St. Louis at Barnes-Jewish Hospital with truncus arteriosus, a congenital heart defect and spent just 18 days at home.  Oakes endured many surgeries including two open-heart and a lung transplant.  He earned the nickname “Mighty” Oakes early in life after miraculous recoveries from conditions he was not expected to survive. 

The story of his strength, his courage, his passionate willingness to live and his intense love for his family and friends inspired thousands of people across the globe and led to the founding of Mighty Oakes Heart Foundation whose objective is to provide financial support to families coping with the traumatic reality of CHDs. 

Oakes is survived by his mama, Rebecca Ortyl, his papa, Greg Ortyl and his beloved big sister, Isla Patrina Ortyl; great-grandmother Patrina Ortyl of O’Fallon, MO; grandparents: Bill Fox and Jan Christine of Wilmington, NC, Connie and Dale Moore of Guthrie, OK and Greg and Mary Jane Ortyl of St. Louis, MO; and the rest of his extensive, loving family.  The family also wishes to recognize the tremendously talented, respected and deeply loved team of physicians, nurses and staff in the Cardiac ICU at SLCH.  In lieu of flowers or gifts, the family is humbly asking for donations to Mighty Oakes Heart Foundation at www.mightyoakes.org and for you to consider a donation of blood and/or registering for organ donation.  A memorial funeral service will be held this Saturday, June 16, 2012 at Holy Redeemer Catholic Church in Webster Groves, Missouri at 10:00 AM.

 

Tuesday, June 12, 2012

Mighty Oakes - MORE Celebration Details - 6/16/12

Friend and family – good evening.  I sent an evite out yesterday around 1:30pm CT, but in case you didn’t get it or if it was hard to read, here is what we have planned for our little turkey’s celebration:

 

 

·         Mighty Oakes Memorial Mass.

o   Saturday, June 16th, 2012 at 10am Central; should take about 60-75 minutes.

o   Mass will be held at Holy Redeemer Catholic Church at 341 E. Lockwood Avenue, Webster Groves, MO, 63119.

o   Everyone is invited and we urge you not to where black and to not be afraid to dress colorfully – this is a celebration.

o   Oakes’ Mama & Papa will eulogize the mighty man.

·         Mighty Oakes Celebration Party.

o   Saturday, June 16th, 2012 from 12pm Central to 4pm Central.

o   Party to be held at the World’s Fair Pavilion in St. Louis’ Forest Park, one of the largest urban parks in the US. 

§  Forest Park hosted the 1904 World’s Fair and is home to the St. Louis Zoo, the St. Louis Art Museum (both having fee admittance), the History Museum, the Jewel Box greenhouse, the Science Center Planetarium, The Muny (an outdoor amphitheater), two golf courses, lots of tennis courts, many lakes, a 5.56 mile running/biking path and dozens of pieces of artwork.

§  Forest Park sits just north of the intersection of Interstate 64/40 and the Hampton Ave. exit.  There are many signs within the park directing you to the World’s Fair Pavilion.  There is plenty of very close parking and it is wheelchair accessible.  To learn more about Forest Park, you can visit http://www.forestparkforever.org/.

o   As of 6:15pm Central, we have 216 confirmed attendees which includes almost 100 kids!  We will likely have 300 attendees and we are ready!!

o   We have confirmed the following entertainment:

§  A bounce house

§  Two face painters

§  A bouncy basketball hoop

§  A balloon artist

§  We’re doing a “heart” balloon release

§  Sno-cone truck

§  Special Edition “BE MIGHTY” Mighty Oakes Heart Foundation t-shirts in all sizes and colors for kids and adults

§  Mighty Oakes slideshow capturing a pictorial history of his life set to music

§  Lots of nick-nacks for kids to play with

§  Close to confirming a blood drive

o   We have confirmed the following food and beverages:

§  Dewey’s Pizza is donating pizza and salads

§  Llewelyn’s Pub is donating soda, water, hot dogs, chips and more

§  The Block Restaurant Butcher & Bar is donating several tubs of yummy macaroni & cheese

§  InBev Anheuser-Busch is donating lots of beer

§  Siduri & Novy Wineries is donating their fantastic wine

§  We’re working on some other finishing touches

§  We’ll have plenty of ice, cups, plates, napkins, etc.

o   We’ll have seating for at least 200 people thinking that lots of people will be playing games or otherwise running around.

o   Dress comfortable and, if you want, bring your favorite yard game as there is plenty of space around.  And if you want a real comfy chair, feel free to bring it, but not a necessity.

o   Hotels – it’s really too late to block a bunch of rooms, but we got three hotels near Forest Park who were nice enough to provide discounted rates.  If these don’t work, there are lots of hotels nearby.

§  Spring Hill Suites by Marriott.

·         1231 Strassner Drive, St. Louis, MO, 63144, 314-647-8400

§  Hampton Inn.

·         5650 Oakland Avenue, St. Louis, MO, 63110, 314-655-3993

§  Homewood Suites by Hilton.

·         8040 Clayton Road, St. Louis, MO, 63117, 314-863-7700

 

Please RSVP to the evite either way and we hope to see you all there.  Check out our foundation website for more information on how you can help – www.mightyoakes.org.

 

Love, G&B&I&O

 

From: Greg Ortyl
Sent: Saturday, June 09, 2012 1:33 PM
To: 'becky fox ortyl'; 'gortyl@yahoo.com'
Subject: Mighty Oakes Celebration Details - 6/16/12

 

Friends and family – good afternoon.  We wanted to pass along details as soon as possible regarding the Oakes’ celebration next Saturday, June 16th.  We are planning a Catholic Mass at our church, Holy Redeemer, here in Webster Groves, Missouri at 10am Central.  Holy Redeemer’s address is 341 East Lockwood Avenue, Webster Groves, MO, 63119.  Becky and I will both be eulogizing Oakes during the Mass.  We figure the Mass will last about 60 minutes or so.  Then the fun begins……and we really want to see ALL of you who can possibly make it!

 

Although we have not finalized the venue, we expect the Celebration Party to be held at a St. Louis landmark and will likely take place from around 12pm Central throughout the rest of the day.  It will be the best party your family attends this year!!  It will be super-kid focused and fun for everyone else too.  Although there are many helpers in the midst of planning and finalizing these details, here are the highlights we are hoping to provide:

 

·         Fun, outdoor setting with plenty of room to run around (maybe even a pond nearby)

o   Cover in case of rain

o   Plenty of shade to get out of the sun

o   Breezy area that we can supplement with fans or misters

·         A bubble truck

·         Face painter

·         Balloon artist

·         Bounce house

·         Tasty food & delicious drinks for young and old alike

·         Blood drive & organ donation sign up

·         Special Edition Mighty Oakes Heart Foundation shirts for kids and adults of all sizes

 

We are in the process of getting blocks of rooms at three area hotels, but we have not finalized the rates just yet:

 

1.       Spring Hill Suites by Marriott.

a.       1231 Strassner Drive, St. Louis, MO, 63144, 314-647-8400

2.       Hampton Inn.

a.       5650 Oakland Avenue, St. Louis, MO, 63110, 314-655-3993

3.       Homewood Suites by Hilton.

a.       8040 Clayton Road, St. Louis, MO, 63117, 314-863-7700

 

For immediate family, you may want to check with your airline for any type of bereavement fares they offer.  If they ask for proof of death, we expect the obituary to run in the St. Louis Post-Dispatch Monday or Tuesday or we can fax the death certificate to you.

 

As you can see, we are blowing it out and REALLY, REALLY hope to see you all.  So book a ticket, call a hotel, gas up the car, pack fun clothes and we will see you and your families one week from today.  We will be able to accommodate hundreds, so that is what we are planning.

 

We hope to have final confirmation of times and venue no later than Monday mid-day and we will send an evite to each of you, so please respond to that evite one way or the other at your earliest convenience.

 

Love to you all,

 

Greg, Becky, Isla P. & Mighty Oakes

www.mightyoakes.org

www.babyortyl.blogspot.com

 

Monday, June 11, 2012

scottmalchow added a comment

Mighty Oakes Celebration

Hosted by The Ortyl Family

scottmalchow posted a comment.

“Sorry we are in London. Have a great celebration of his life, thoughts are with you!”

To see the entire thread, please click the following link:
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Evite Invitation: Mighty Oakes Celebration

The Ortyl Family invited you to

Mighty Oakes Celebration

Saturday, June 16, 2012
12:00 PM - 4:00 PM

Where:
World's Fair Pavilion-Forest Park
Park Located Just North Of Interstate 64/40 & Hampton Ave. Intersection
St. Louis MO 63110

Will you attend?
Yes Maybe No
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Saturday, June 9, 2012

Lessons From Oakes - Part 2

In reference to the post that we completed this morning, we inadvertently left off the email address for the lessons from oakes, so here it is:

LessonsFromOakes@gmail.com

Hope to hear from you all soon.