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……
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.
...........................................................
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
