Everett Meets the Mitten

Everett made it to Michigan, just before he hit the 6-month mark.  Like most things these days, it was a bittersweet trip.  Constant reminders of what we should have experienced with Oberon, nearly constant smiles from our sweet Everett.

Everett's first time in the mitten - June 25, 2016

We got to introduce the little dragonfly to family on both Mom and Dad's side.  Everett attended a wedding, charmed lots of people, and was fascinated by small children.

Meeting lots of family in Michigan

We took him to MSU's campus to see Beaumont Tower, stroll through the Beal Botanical Garden, and meet Sparty for the first time.  (Don't worry Wolverines - Ann Arbor is on the docket for our next Michigan trip.)

Chris, Everett, and Sparty - June 27, 2016

It was special to see our loved ones interacting with our lil' beastie.  It warmed our hearts and for the most part we were able to keep it together emotionally.  But there were moments.  Like at a family wedding where there were rocks hidden with the kids' names on them.  We found Everett's, and kept our eyes open in case there was one for Oberon - not really expecting to find one.  After asking if they could make one for Oberon for us to take later, we found out Obie was already included - they were just afraid another child would take it not realizing.  These moments of remembering and thoughtfulness are extremely special to us.

A couple of days before we left California, we talked about whether to bring Obie's Molly Bear or not.  We landed on it not being a good idea to try to take such a special bear, that always looks weird to TSA, while traveling with an infant.  Once the decision was made to leave the bear at home, Elizabeth decided to steal an idea from many loss moms and bring an "O" with us.  We went to Michaels and ordered more from Amazon.com; we actually bought a lot of Os.

Meeting lots of family on Dad's side - June 26, 2016

And lots of family on Mom's side - July 2, 2016

The family pictures are changing as the years go by.  Children are born, people get married, and others pass away.  It makes us very sad that Oberon didn't get to be in a big extended family picture when he was alive.  Maybe that's why it's so important to us to include him somehow visually.

We've been back in California for a few weeks, and the trip already feels ages away.  Everett has already changed so much - he's now a pro at eating from a spoon, holding a toy in each hand, and rolling wherever he wants to go.  And new tricks like sitting up, babbling, and pushing up on his hands and knees are just about here.

Happy 6 Months, Everett - July 7, 2016

Mommy's payback plan for not going to Ann Arbor...this time

Living with Guilt

We've been feeling some guilt.

Going to take a wild guess and posit that every parent feels guilty at one time or another.  

The guilt we're talking about is probably a little bit different.  When a day goes by that we don't talk about Oberon, there is guilt.  When we pull back from coverage of tragedies because our hearts can't take it, there is guilt.  When we aren't doing everything we can to raise money and awareness for Obie's favorite charities, there is guilt.

Everett is growing and changing, and is currently a smile machine.  His giggles melt our hearts and his developments make us proud.  Some days, it probably looks like everything is perfect.  Some days, we don't talk out loud about why it isn't.

Everett - June 7, 2016

Living far away from family exacerbates some of the guilt we feel.  Not everyone got to meet Oberon, and many people haven't yet met Everett as he approaches six months old.  This seems ridiculous, but it's reality when you live thousands of miles from some of the most important people in your life.  Fortunately, we'll be traveling to Michigan later this month and introducing Everett to lots of people who already love him.  Even so, there is guilt with this trip because it wasn't soon enough for Everett to meet Nanny, his great grandma.  Nanny passed away two weeks before our trip, which feels like a cruel coincidence.

Nanny and Elizabeth pregnant with Obie, at his baby shower - October 2014

For Elizabeth, when the guilt comes up she pulls back.  It's hard to engage with your living child when you feel guilty about their sibling.  Thoughts like, "none of this matters", "how can I be happy when my son is dead?", and "I have no control over anything so why bother?" swirl around.  

Try as we might, grief isn't always healthy.  It isn't always able to be channeled into loving, productive ways.  Sometimes, we just feel shitty.  And guilt about guilt is a real thing, especially in a society that values a "stiff upper lip" and "making it work."  Of course we have to make it work, one day, one moment at a time.  But sometimes we just need to express what's really going on in our hearts, even if it isn't beautiful or positive.

Oberon - December 10, 2014

Changing Seasons

A lot has happened in the last month.

Elizabeth is back at work full time, which means Evie started day care.  Mother's Day.  Evie had his first plane flight.  Elizabeth started teaching dance again.  And that's not even getting into developmental milestones.

May 10, 2016

The first big spring thing for us was Mother's Day.  We went hiking at Uvas Canyon, where Obie's ashes are.  We drove up in the late morning, but the park was full.  That hadn't even crossed our minds as a possibility and we were thrown for a loop.  Luckily, we were able to come back in the afternoon and spend some time at this special place.

One of Evie's dragonflies at Uvas Canyon.  May 8, 2016.

At Manzanita Point.  May 8, 2016.

Mother's Day felt weird.  Maybe it will feel different when Everett is old enough to be making school projects and writing his name in cards.  To Elizabeth, right now, it felt more like a reminder of what our family is missing.  Maybe it will always feel that way.

On May 12, Elizabeth returned to work full time and Everett started day care.  To many Americans, this seems like a late return to work.  To most of the world, it seems like way too soon.  Can it be both?  By taking advantage of California's Paid Family Leave and the federal Family & Medical Leave Act, Elizabeth was able to stay home with Everett for 18 weeks.  

While the time home with Everett was important for everyone, it was also stressful.  Not in a negative way, but taking care of an infant requires constant attention.  Often Elizabeth was doing two or three things at once, and only getting any sort of respite if Everett happened to take a nap where she could set him down (not a given on any particular day).  Now that Everett is in day care, she can do one thing at a time.  The first time she sat and ate lunch - and didn't do anything else - since Evie was born was her first day back at work.  It was strange, but also offers an opportunity to recharge.  

We are still learning this new schedule.  Figuring out how to balance household chores with getting Everett settled for bed and dinner for us is a work in progress.  

Leaving Everett with day care is hard, but not as emotionally intense as we expected.  Getting pictures like this on day one certainly helped.

Evie having fun at day care, May 12, 2016.

Living in a different state from everyone in our immediate families means Everett is going to travel by plane.  It was only a matter of time.  Turns out his first flight was from San Francisco to Chicago-O'Hare.  We tried to give ourselves the best chance for success - direct flights, late morning, Economy Plus seating, renting a car seat instead of carrying one, shipping a Pack & Play direct instead of carrying one...but you can't plan for everything!

First flight with a lap child, May 20, 2016.

We sat on the tarmac for nearly two hours waiting for a pilot.  Everett took big ol' nap.  It was awesome, but we were nervous we were using up all our easy time.  Turns out we needn't have worried as Evie was as good as a baby could be.  Minimal crying, lots of napping, and no blow outs.  Multiple strangers told us how good he did.  That one goes in the win column.

Everett was also surprisingly chill with being in a new house, meeting more new people (and a dog), going to restaurants, and the dreaded time change.  Did he sleep that first night?  Not really, but he was in such an adorable giddy mood that it kept us from getting too frustrated.

 Meeting cousins...

and besties...

and hanging with a familiar Aunt, all on May 22, 2016.

Everett is learning new things every day.  Watching him figure things out is amazing - there's nothing quite like it.  He's making sense of the world around him, and that's pretty neat.  He's much more vocal than even a month ago, squealing, cooing, and grunting.  Still working on those consonant sounds, but they'll be coming any day.

He loves his Exersaucer, sitting up (with some assistance), and when he's in the mood for it, rolling over.  He's a strong little guy (even the day care lady says so), which makes sense because his 25th percentile body has been holding up a 95th+ percentile head this whole time.

 You must not hop on pop! May 2016.

All smiles for tummy time, May 2016.

Last year, everything felt stuck.  Seasons seemed ridiculous.  This year, change is constant and the seasons mirror that.  As we head into summer, the weather is getting HOT, Everett is getting more and more of a personality, and we'll embark on parenting challenges such as sleep training, solid foods, and mobility.

Part of our Family Forever

We said it at the beginning.  Oberon may have only lived with us for a short while, but he is part of our family forever.

Chris, Everett, Elizabeth, and Obie Bear - January 15, 2016

Truthfully, with Everett now here and demanding attention as an infant should, it is harder to find the space for Oberon to be the focus.  Instead of having Oberon at the center of everything, we have to juggle.

Sometimes that means late nights after Evie has gone to sleep is the only time we talk to each other about Obie.  Sometimes it means tearful storytelling to Evie about his big brother and how much we miss him.  Other times it's as simple as pointing out Obie's bees.

Obie's Bees at Happy Hollow in San Jose, CA

Giving for Obie is something we want to continue doing, so we bit the bullet and set up monthly donations for Obie's favorite charities (FNIH, NORD, Now I Lay Me Down To Sleep, and JW House - read more about them here).  We still plan to give some larger donations when milestones dates come around, but this way we make sure it doesn't slip through the cracks.

We have a few books that are specific to making sure Everett knows about his big brother, but Elizabeth still finds them too hard to read out loud.  Someday we hope to make a picture book about Oberon like the ones we made for his cousins, but that's been too hard so far as well.

We've officially started taking Everett on family hikes.  Starting with very easy ones, we hope to get up to moderate (and maybe even difficult!) hikes soon.  It's a learning process bringing an infant with us on the trails, keeping him both safe and happy.  We got into hiking because of Oberon, and we'll make sure Evie knows that.  Finding yellow wildflowers and bees on the trail definitely helps!

Almaden Quicksilver on April 17, 2016

Summit Meadows on April 23, 2016

Elizabeth keeps working on Obie Blankets.  While she can't make them at the pace she did before, it feels good to make something for Obie and for other babies gone too soon.

Of course, Chris already has his tattoo, which we've nicknamed the bumble butt.  It goes with him everywhere and Elizabeth is totally jealous.

Another small thing we've done is add a bee sticker to the 24th of every month on our wall calendar.  When Everett gets a little older, we'll try to have a specific thing we do on the 24ths.  Maybe it's family game time, maybe it's craft time, who knows?  But it will be something we do together.

Elizabeth still goes to support groups, though not as often as before.  It's trickier with the timing and making sure Evie has what he needs, and that she isn't gone too long (breastfeeding - more logistics than we ever thought possible).  Chris hasn't gone back to a support group since Evie was born, but he will at some point when the logistics are a bit easier.  It's good to have some time set aside to just focus on Oberon, although the people who know us are also interested in hearing about Everett.  The people we've met in support groups are incredibly (for lack of a better word) supportive.  They truly care about us and about Evie, and that's a really good feeling.  They understand that Evie doesn't replace Oberon, but that he is also special and brings us joy.

We suppose this could all be summed up in that we're trying to keep Oberon present in our day to day lives, along with special milestone days like his birthday (Obie's Bee Day) and Obie Xmas.  Life really is mostly the day to day, so integrating Oberon is important.

Is this what they mean when they talk about finding a new normal?  The idea seemed repulsive at first.  How can it ever be normal to live without your child?  It isn't, but you still have to get through the days.  Now that we're settling in more and more to being Everett's parents, there is more routine and less intensity.  It's very easy to include Oberon in the intense times - it's inevitable.  Both the good and the bad extremes are forever touched by him and will always include memories (and likely, tears).  It's the routine times that are tricky, so we're doing our best to be mindful.  Doing our best to keep our first boy in our hearts, in our minds, and on our tongues.

Chris, Elizabeth, and Oberon - December 10, 2014

Meet & Greet

Everett has been a busy guy!  He's now met both sets of grandparents, two aunts, one uncle, and two cousins!  In a couple weeks he'll meet another aunt, uncle, and two other cousins.  We love getting to introduce him to his extended family and love seeing our families pour out love for Evie, just like they do for his big brother, Oberon.

Everett hanging out with family.

Last week, Elizabeth took Everett to the office to meet many of Chris and Elizabeth's coworkers.  They organized a small fun gathering with cake and balloons, and Evie was a perfect gentleman while meeting lots of new people - alert and quiet!  Our co-workers were extremely generous and thoughtful, ensuring to ask what we would be comfortable with in advance and not dropping any big surprises on us (like they usually do for wedding and baby showers).  It was strange for Elizabeth to be back - she hasn't been in the office since a few weeks before Everett was born - but it was nice.

The next day, we also had a welcome party where Everett met some of our California community.  We didn't have a baby shower for Everett when Elizabeth was pregnant because it felt wrong, so we had the "Welcome Everett" party instead.  After he was here and healthy.  Again, our friends were wonderful (especially the party planners and hosts!) and it was nice to introduce Evie to more people, and some special friends closer to Evie's age.

A very special day for a very special guy.

Not too unexpectedly, quite a few families canceled the day of and days before the party.  Sick kids, sick adults, and even some contractions!  We missed those who couldn't make it, but we enjoyed seeing Evie react to the new faces of those that did.

Speaking of reactions, Everett had the most connection with (and smiles for) the fellow loss parents that have met him.  It's really an emotional experience for us (and it seems to be for them, too).  Evie must pick up on that, because he puts on a show.  Big, open eyes and a big, wide smile.  For Elizabeth, it's these moments where some of the positive emotions of having Everett here are closest to the surface.

One thing we started at Everett's welcome party is quilt squares.  We asked our friends to make squares for Evie, which will eventually become a quilt.  We're excited to keep adding to the stack so he can be wrapped with the words and drawings of the people who love him and his big brother.  There were a few drawings, cards, and gifts that mentioned Oberon - either directly or indirectly with Obie's bees.  These never go unnoticed, and always give our heart a little hug.

Evie is growing and learning every day, and like almost all parents we are amazed and amused by him.  He has a very sweet temperament (most of the time), and for that we know we are fortunate.  It still all feels a bit surreal.  While Evie's smiles make us smile and his cuddles warm our hearts, we still find ourselves missing Oberon constantly.  With less time in the day to focus on our grief, sometimes it comes out in force.  Sometimes triggers hit very intensely.  Maybe it's a specific book that triggers a memory, sometimes it's a sound that Everett makes just like his brother.   We talk with him about all his family members, including big brother Obie.  There is a big picture of Oberon on the wall behind the glider that Everett often looks at while getting burped.

Rocking tummy time with his scared-of-camera face.

We've also been busy getting more pictures up our walls.  The Oberon sunset photo Elizabeth had taken last year is now printed on a large canvas, hanging next to Obie's curio opposite a spread of four photos of Obie's bees that Chris took on hikes.  We've also gotten some pictures of Evie up on the walls too, integrating pictures of Evie with those of Obie already on the walls.  We'll run out of space eventually, but not yet!

New canvas pictures in the living room.

Plenty of Rare to Go Around

Everybody's got something.

Elizabeth has allergies, asthma, lactose intolerance, eye problems, and weird cycles.  Chris has allergies, eyesight problems (pre-LASIK), and bad knees and ankles.   We both have crummy tummies and dry skin.  We were lucky kids that our inherent medical issues weren't serious, but we had something.

So far, Everett is a healthy infant developing as expected.  We're sure something will pop up in infancy, toddlerhood, or childhood that needs some medical intervention.  Probably glasses and probably allergy meds, if he takes after Mommy and Daddy.  It's tough not to go down every rare disease rabbit hole.  He might have a rare, chronic, serious issue come up.  He probably won't.  That's hard to get our heads around.  When you've been the 1 in a _____, it's hard to find comfort in population statistics.

Growing up, we all knew kids who had serious problems.  Life altering or life threatening problems.

Once you've had a kid with a serious diagnosis - whether they pass away or not - you start becoming much more aware of all the "rare" things that can happen.  You hear stories from people in support groups, you read articles online, you pay more attention to storylines on TV.

Rare is everywhere, once your eyes are open.

There are two insidious ways a rare diagnosis specifically isolates families.  Firstly, since it's rare, we have to take on a role of educator for our friends and families.  This can be exhausting, especially in the beginning.  People don't automatically know what we're going through, and we often can't easily find people who do get it - people in the same boat as us.  It's a small boat.

Second is there typically isn't a lot of medical experience and literature to lead the way.  More common ailments have gotten more attention over the years - and rightly so.  But it still sucks when you realize there aren't answers for you, for your kid.  Now in addition to educators we have to be advocates.  With regards to Oberon, we knew some of his problems were categorized as Beckwith-Wiedemann Syndrome (BWS), but not all.  And we have no idea what caused any of it.  It wasn't inherited, and the doctors weren't able to identify anything else that would have caused BWS and cerebral atrophy in the third trimester.  Maybe someday, families like ours can get answers - or better yet, families can take actions or precautions to avoid developing these issues.  None of that happens without more research.

That's a lot to pile on in addition to being parents and caregivers.

The internet has helped a lot.  The other thing that has helped is individual rare disease communities coming together to be a larger community.  And on the rarest day of the year, February 29, we are raising awareness with Rare Disease Day.  This is a global effort, but you can find info on the U.S. Rare Disease Day here.  In fact, one of Obie's favorite charities is the U.S. sponsor - NORD!  There are live events (especially at State Houses), and you can join in the social media conversation by using #RareDiseaseDay.

We're glad that something like Rare Disease Day exists, but at the same time it really sucks.  Despite how advanced medicine is, there are still countless horrible diseases.  There are still millions of people dealing with the fallout of these diseases.

Our family is obviously dealing with the grief of losing Oberon, but he isn't the only rare kid in our family.  Our niece, Grace, has PMM2-CDG - an extremely rare glycosylation disorder.  It took eight months to get a diagnosis for Gracie when she was an infant, and for others it takes even longer.  She's a happy kid working on motor skills with horseback riding and other cool physical therapy workouts.  Her parents are dedicated to getting the best care for Grace and have traveled to France and San Diego to attend conferences on PMM2-CDG.

We need awareness and empathy, and we also need research.  That's why we will continue supporting NORD and FNIH.  In memory of Oberon, and in honor of the beloved kids in our life who are battling rare diseases.  They are awesome, and they deserve the best this world has to offer.  To celebrate Rare Disease Day, we will be making a donation in memory of Oberon, in honor of our niece Grace, and in honor of a very close friend who was recently diagnosed with yet another extremely rare disease.  If you love a kid (or an adult) with a rare disease - consider donating to help advocacy or research supporting rare diseases on #RareDiseaseDay.  As NORD says, alone we are rare, together we are strong.

Oberon on December 9, 2014

Grace on her first day of preschool in Fall 2015

Adventures in Parenting After Loss - The First Month

Everett is officially out of the newborn stage and into the 1-month-old stage.  While it hasn't been perfectly smooth sailing for any of us, there also haven't been any huge issues.  We know we are lucky.

Everett Oberon Fiorani Thoma, 9.4 lbs and 21.25" at one month old.

It feels like forever since we went to the hospital at 38-and-change weeks pregnant.  People talk about time going by so quickly, but we haven't really had that experience.  It sort of feels like January melted away, but that was more because we weren't doing the normal things than that it went by quickly.

Everett's pretty good at breastfeeding, though he gets lazy sometimes.  In fact, his overaggressive sucking (and sometimes chomping) is probably to blame for the mastitis Elizabeth has.  The symptoms of mastitis started as just an ache in the breast, but a few hours later Elizabeth had a fever over 100deg F, the shakes, and was barely able to sit upright.  Thank goodness for modern medicine, because a dose of Tylenol and antibiotics later and she felt almost back to her old (still very tired) self.  Now we're working on having a consistent good latch.  Evie likes to have a shallow latch sometimes, and that's not great for any of us.

Even though it's going mostly well, it's still tough.  Feeding every 2-3 hours (still), with the occasional 4-hour gap, is a lot of time.  One of the NICU doctors told us, "breastfeeding sucks for the first two months, and then all of a sudden it's awesome."  We wouldn't say it sucks, but it is draining (no pun intended).

Breastfeeding can be pretty anxiety-inducing, because you can't really tell how much the baby is eating.  We just have to go by behavior, dirty diapers, and weight gain, which is tough (especially in the beginning, when we are still learning Everett's individual patterns).  After a month, it does seem like Everett's weight gain is right along the expected curve, so that's encouraging.  He's a bit on the small side (25-30 percentile-ish), but tracking right along that curve.  Today, he's up to 9.4 lbs.  How did we check?  Well, we use a luggage weight checker with Everett in the car seat.

Our growing lil' beastie.

Way back before Oberon was born, we never thought we'd be "those parents" who use monitors while their children sleep.  Well, now we have an Owlet and it's the only way we get any real sleep.  Knowing that a loud beeping sound will alert us if Evie's heartbeat or oxygen saturation veer too far from normal helps us relax just enough.  Elizabeth still wakes often at the first sound of Evie's cries, or just to check on him.  Chris is more of a deep sleeper.

We've hit a lot of milestones this month.  Chris is already back to work, leaving Elizabeth and Everett to have many hours of mommy-son time during the days.  First pediatrician visit, first bottle, first poop shooting off the changing table, first walk in the stroller, and many other firsts we're forgetting to mention.

Daddy give Everett his first bottle - 2/6/2016

Having Everett here brings back a lot of the grief for Oberon.  Holding him we sometimes have flashbacks to holding Oberon.  While they don't look identical, they do look like brothers.  Certain looks or angles, and it's like they are twins.

With Everett being one month old, he's only a couple days away from being older than Oberon ever was on the outside.  Although we won't know exactly what emotions will come those days, it hasn't seemed as intense as we'd thought.  In most ways, Everett is already older than Oberon.  Since Oberon was born so early, and was so sick, it already seems entirely different.  Oberon was much sleepier than Everett, and his alert time was almost never fussy.  Everett gets pretty fussy when his diaper is dirty, he's trying to poop, wants a pacifier, or just wants more attention.  Elizabeth jokes that it's all Chris's fault, since he's so picky about fabric and has such sensitive skin.

Even today is bittersweet.  It's Everett's one-month-old day, which is happy.  It's also Super Bowl Sunday, and last year on Super Bowl Sunday we took Oberon's ashes to spread at Uvas Canyon.  Thinking about that day still brings tears to our eyes and pain to our hearts.  Thinking about how our sons will never meet, never play together, and we'll never have a full family picture - all these things bring fresh grief to the forefront.

Our family on 2/7/2016.  Everett wasn't in a great mood for pictures.

Some people fall head-over-heels for their babies the instant they are born.  Chris felt this way for Oberon and Everett, feeling instantly connected the moment he saw each of them being born.  With Obie, Chris's had to follow him to the NICU and stayed with him until he was admitted and things had calmed down a bit.  Holding his hand for the first time, seeing his eyes, Chris was smitten for his son immediately without reservation.  He remembers finally going back to the room and telling Elizabeth how wonderful Obie was and how much he was in love.  It was very much the same with Everett, with immense love swirled into the wave of emotions in the delivery room.  It definitely feels terrible leaving E and e for the day when Chris has to go to work, but coming home to both is a joy every day, no matter what.

For Elizabeth, it wasn't that immediate with Oberon, and it wasn't that way with Everett either.  Sometimes love is more of a slow burn, and she hopes that's what's happening.  Maybe it's from parenting after loss, maybe it's being emotionally shocked with the NICU stay and not really recovering yet, maybe it's just how she is as a mom.  It's hard not to feel guilty.  Guilty about not cooing over Everett all day, guilty about having less time to focus on Oberon.  Hopefully there will be a balance someday, but right now it feels like the opposite of balance.  Not even really imbalance, just not enough of anything.  As Everett grows, she's hoping her love for him will continue to grow until it's bigger than she could imagine.  And also as he grows, she will be able to share his big brother with him, and have a little more time to focus on Obie.