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.